Established April 15, 1995
University of West Georgia Disclaimer
I am a 46 year old woman who graduated from Fairleigh Dickinson University in Teaneck, NJ, with a degree in Accounting at the age of 35. Having to go to school nights, I worked at least one or two jobs, and I made the most of my education. While I received my degree in Accounting, I quickly learned that I had an aptitude for computers so I changed careers about 16 years ago.
I enjoy home decorating and home improvement projects, landscaping, reading, golf, and crafts. My home has three adopted cats which were saved from shelters who bring me much joy. Having been diagnosed as being a DES child, I have probably had more medical problems and operations than most. Due to this, I have made it my goal to work out at least 5 days a week and pay special attention to my weight and mental health. I guess those previous surgeries were just a warm-up for the most important operation of my life.
October 12, 1998
During the end of June, I noticed I could not see as well out of my right eye and I had daily headaches. I was referred to a retinal specialist and had several appointments to complete approximately six tests. During the eye ultrasound, one of the retinal specialists commented that my optic nerves where out of shape and recommended an MRI. The MRI took over 1.5 hours and three technicians; I knew something was up. I was informed to see my family doctor immediately. I picked up the MRI report and films and saw my family doctor who recommended a neurosurgeon in my area. I saw this doctor at 8 am the next day who explained what an AVM is, showed me the films, and got in contact with a neurosurgeon at Shands Hospital for an appointment while I was in his office.
Iwas lucky to get Dr. Day who specializes in aneurysms and AVM's and through the referral got an immediate appointment. Two days later I was in Gainesville meeting with Dr. Day who detailed the three options I had for the treatment of this condition (actually two options as one of the options was do nothing and due to my age, that was not an alternative). After all the pros and cons which Dr. Day detailed explicitly through drawings and charts, I optioned for surgery as I knew that was the only way I could be sure the AVM was removed forever. The next morning they completed an arteriogram by a staff of neuroradiologists which showed the exact location and size of my AVM — my AVM was 3.5cm. In five days my life was turned upside down and I started researching everything on AVM's.
I was scheduled for surgery August 12 in Gainesville. Due to the size of my AVM, the team of doctors opted to complete an embolization on August 11. My embolization was over 6 hours and they left two bleeders which they said they would take care of during surgery the next day. My surgery went over 7 hours and went well. They stopped 3 bleeders and I lost about 1200cc of blood. The AVM was in the front temporal lobe and was about 3.5cm in size.
The operation was successful and I could move both my arms and legs and understood everything in conversation. I was in ICU about 3.5 days and moved to the regular floor (by-passed step-down) and both of my surgeons said I was doing so well.
Well, six days after my embolization I had a grand mal seizure over 15 minutes which left me temporarily paralyzed on my right side, lost my speech temporarily, and lost part of my memory. So I was sent up to ICU again. I left the hospital two weeks after I was admitted.
During my recuperation, I lost a good part of my hair (radiation during the embolization), part of my hair turned white, I was taking rehab (OT and PT), and trying to get back to what I was. The surgeon during my six week post op said I was doing great. Oh, yes, last week I had a toxic reaction to the Dilantin and the doctor is adjusting my dosage.
Overall, the surgery went fine but I had a lot of complications in post surgery. I have been released from PT and am set up for speech evaluation this Wednesday. I still go to OT 2x/week.
It has been a tough road but I am now AVM free and this week I am just starting to feel like my old self is returning. The strange thing is you have no idea how difficult brain surgery can be until you have complications. I went through three weeks of solid post op depression, anger at the smallest things, memory loss, frustration, tiredness, and wondering if I was ever going to feel like myself. I am now feeling like I'm on the road to recovery (if I could just get rid of these cluster headaches that run 3+ continuous days and nothing works to get rid of them).
I have had great support which really helped. I am now bicycling (exercise bike) and doing sit-ups and swimming every day just like I was before the surgery. I have determination to get back to 100% (or more), it will just take longer than I anticipated. My therapists have been great inspiration and have worked me hard. They are confident I will gain most if not all of my abilities as once we review something once or twice, I have it down pat. See, I learned how to type again!
It's hard to believe that my embolization and surgery was August 11 & 12. While it seems ages to me, my friends and family are amazed at my progress. While I could put a sentence together 2 weeks ago and had no balance, I am now speaking a paragraph or two. Of course, my tiredness shows up in my speech, walking and headaches dramatically. I still have to work on my stamina, but it's getting better.
Update: 4 Dec 98
Hi there. It's that time of year again. The months just seem to go so quickly that it appears we only catch site of the really important things as Christmas approaches.
Well, as you know it was an especially challenging year for me. Mid summer was just humming along and then everything went haywire. Who would have thought that a birth defect could cause so much havoc. Happily after some great neurosurgeons, a lot of work in physical, occupational, and speech therapy, I am on the road to recovery. Of course, my hair is still growing back; it is interesting to see the colors that are growing back (mostly white). I am still attending speech therapy four times a week due to an insurance deadline. My speech therapist is working as hard as I am while we work on recall, memory issues, concentration, and comprehension. It's a challenge going four times a week; but I continue to get the most out of the assistance.
My neurologist has changed my meds from Dilantin to Tegretol. The Dilantin was making me very depressed and we had lowered it several times so that I was down to 400 mg a day. As the new medication has some major side effects, we are monitoring my blood levels every two weeks. You could say that the Blood Lab has become my home away from home, and I have become to know the head lab tech, Debbie, very well.
Iam now seeing my contact lens guy, Dan, to see if we can find a lens that will correct my vision. This is almost as tough as the rehab; but I'm sure we will succeed in time. We have gone through two types of progressive lenses so far, and we are back to ground zero. Unfortunately, I lost my first left lens which was a trial lens on Thanksgiving morning while my Mom and I shopped in K-Mart. Such is life. I am scheduled to go back on Wednesday, December 16th, for a re-evaluation. We will keep trying.
Ihave had many ups and downs during this recuperative period; partially from the Dilantin and partially from my frustration to get better. During these times and to keep myself busy, I have used my creative side. You know the old saying, "keep busy to avoid thinking too much." Thank goodness this area of my brain has been unaffected. This has allowed me to work on small projects such as creating cards, letters, e-mails, as well as work on some home decorating ideas. These small tasks give me the lift that I have completed something to be proud of.
Thanks to Bill Maples, I have met many people from all over the world through the AVM/Aneurysm site who have similar issues as I do. This has been a great support network and some of us have created our own little support group via e-mail . Each of us uses our experience to give hope and positive assistance to other survivors, as well as discuss our progress with each other. The e-cards, jokes via email, the prayers, and the support from this site are greatly appreciated. I would like to take this opportunity to thank everyone. THANK YOU! YOU HAVE MADE THIS MUCH EASIER.
Iwould like you and your family to have a wonderful holiday season and a Happy New Year. I'm looking forward to 1999 as a banner year for hope, health, and friendship; and hopefully a little less chaos for myself.
Iwould like to wish all a very happy Holiday Season. My next visit to Gainesville to see my neurosurgeon is set for January 14th for a six month check-up. I hope to be able to update everyone in mid January 1999.
Prayers and thoughts be with you. — Candy
Update 14 Feb 99
Well, two months have gone by and I'm amazed that life goes on so quickly. I am on the road to recovery, but it is a very slow progress at this point. I went through extensive neurological evaluations in late December. These tests showed my doctors what I thought was going on. The right side of my brain is functioning so well, it is telling me what my left side is unable to do at this point of my recovery. Due to these tests results, I have been put on long term disability for the next six months. In essence, the tests results showed that my high level (or executive level) skills were lacking such as sequencing, concentration, complex operations, memory and recall. Due to these issues, I am unable to return to work without these skills.
Iwent for my 6 month check-up in Gainesville on January 14 and spent a lot of time with my two surgeons (actually 1-1/2 hours). They were amazed at how I have recovered from my temporary right side paralysis. There is no noticeable side effects; I do have some fine motor skill issues in my right hand and do break a few more things than in the past. But my strength is back.
During my visit to Gainesville, my local neurologist documented in his update that I had a stroke. Therefore, Dr. Day ordered a CT with and without contrast to determine if that was true. The good news is NO STROKE. All of my remaining issues are a result from the grand mal seizure on August 18. So I continue to work on gaining those skills that I have lost.
On Wednesday, January 20th, I met my friend and other floor manager, Ira, who has graciously covered for my position at work these past six months. I then met with my Director and then with the supervisors in their weekly meeting. It was a very emotional day for me as I had to tell them that I would not be returning to work by February 11th. They were as upset and disappointed as I was and again reiterated their support. They asked what my remaining issues were and asked how they could assist me. The best of the day was their consistent comment on how they miss me. I miss them as well. My company terminates anyone who has been on medical leave for one year. My Director and Human Resource liaison informed me there would always be a position for me when I was ready to return to work regardless of the termination after one year of sick leave. My job has been posted for hire which makes me very sad. But I have to gain those executive level skills before I can return to work and I'm striving to work on them.
Ihave been authorized by my insurance company to return to Speech/Occupational Therapy two to three times a week for 20 more visits before March 30. I challenge my therapist every week with methods to gain these skills back and have worked on a word association method to try to remember all those words that are missing from my vocabulary. It's hard work for both of us; and I usually leave with one whopper of a headache. But I still strive to gain my old skills back.
My local doctor and a few local aneurysm and brain trauma patients are striving to set up a peer to peer support group to assist family members and brain trauma patients at a local hospital. Due to the politics, hospital requirements, and patient confidentiality issues; it's taken a long time to get operational. But I'm sure that we will be successful in getting it up and running within the next few months.
In the interim, I am going to teach myself Web Design and hope to be able to assist local charity programs when I feel confident in my newly acquired skills. It's hard to believe that I used to design Local and Wide Area Networks and manage over 100 people; but I am working daily on relearning lost skills as well as new ones. Everything takes time, especially recovering from brain surgery and trauma. Like my brother tells me, I now have the opportunity to learn what I want to learn; not what I have to.
Special thanks to all of my cyber friends who I have met through this site. They have been an inspiration to me.
Happy Valentine's Day to all.
Update 2 Mar 99
During my last visit to Shands Hospital almost six weeks ago, I mentioned that my scar appeared to be growing rather than shrinking. It was about 1" wide, 6" long, and had valleys and hills. Dr. Day told me at that time that they could fix it. I told him I would think about it and let him know.
After careful consideration and a discussion with Dr. Day about the risks of this surgery, I asked his office to set up the surgery for me. While my family and some friends did not understand why I wanted to have another surgery, I knew it was the right thing for me. On Friday, January 19, I received the phone call that they could set up my surgery for the following Tuesday or Wednesday. I opted for Wednesday, February 24, as I had already committed to attend a volunteer orientation at a local hospital to become a volunteer for brain trauma patients and families.
Ifelt in a grand mood; I was going to take care of something that bothered me for six months and was not going to allow anyone to change my mind. On Tuesday, my Mom and I went to my orientation at the hospital and left for Gainesville at 11:00. I was scheduled to be at the hospital for pre-admission by 4:30 p.m. and arrived there with time to spare.
After meeting the anesthesiologist and resident neurosurgeon, we went to a casual dinner of ribs. I was to be at the hospital at 7:00 a.m. the next morning. I was prepared for the best. I knew that in my heart, I was doing what was necessary for me.
They wheeled me into the OR wide awake and I had an opportunity to see my good doc and surgeon, Dr. Day, before they put me under. We chatted for a few minutes while he answered all of my questions. Actually, I got to meet the two anesthesiologists, the OR nurse and just about everyone who was to be in the OR during my surgery. Then the lights went out.
Iwas informed that my surgery was to take 3.5-4 hours. Well, when I woke up in the Recovery Room, I do not remember the time. I do remember them asking me those neurological questions that every one has gone through at least 1,000 times before. What day is it, where are you, etc, etc' Besides having a killer headache (but I was used to those), I felt pretty good. Of course, I was lying down with this big bundle of wrap around my head. Was this a new headdress of sorts'
They moved me to my room about 3-4 hours after surgery. I slept some and then watched TV some. Dr. Day, and all of his residents and one fellow surgeon, Dr. Chang, came into my room to see how I was progressing. It was then that Dr. Day informed me that the bones in my skull were thin in places and some of the bones in my cranium were separating or stretching. This is what caused the scar to stretch and develop the uneven track. Joy.... joy... joy! Did I feel smug or what' Now I knew why I was so persistent in getting this scar fixed. The other news what that Dr. Day was unable to use those tiny stitches I had asked for due to this problem. During the surgery they reshaped my skull so that it looked smooth and even all around.
Istayed in the hospital two nights. The second night I was in the hospital, my nursing aid, Ken, gave me a choice of two hats. I picked the surgical caps that the docs wear in OR. I told all the docs that visited me from that point on that someone made me an honorary doc. It gave them a chuckle or two.
Iam home recovering from this 5 hour procedure now. I am bald (AGAIN), have two killer black eyes, and some stretching of the skin and headaches; but know in my heart and soul that this was the best thing I could have done for me. As expected, I have had a slight setback in my speech and walk; but this is temporary. This is from by the anesthesia and will dissipate in a short time. I am hoping that as time heals, I will have fewer and fewer headaches (the docs could not understand why my headaches never truly subsided). I feel like a person again; I did the best thing for me. After all, when you hair is only 1-1.5 inches long, it's not so dramatic to get it shaved off again. So I'm back to my hats and watching excessive amounts of TV until I feel comfortable enough to go out. Geez, it's good to be here!
During my stay this past week, one of my neurosurgeons from my August 1998 surgery stopped in to see me. It was such a surprise that it took me a moment to gather my wits (or what wits I had at that time). It was great to see him as I often think of him when I go to Gainesville. During our visit, he told me that in the next few months he will become the new Chief of Residents. I can't imagine any one more deserving of such an honor and responsibility. Dr. Thomas Ellis, congratulations to you! You bring such attributes as patience, understanding, great knowledge, and forever learning — I know you will be a great success.
Update 12 March 1999
Well, yesterday I received my letter from the Social Security Administration saying that they reviewed my case and have denied my claim. You may read their explanation for denial by clicking here. If I wish, I am allowed to appeal their decision. Having gone through a new evaluation just last Monday at a new rehab center, I was informed that they are recommending 3 months more of speech rehab two-three times a week. I am now seven months post op from my August 12-13 1998 surgery and two weeks post op for my recent surgery. I have forwarded the letter from the Social Security Administration to my disability company to show that I applied and will let them handle it as they will. I'm sure I will hear from them in the near future. I have spent many hours with insurance companies and need to focus my energies on rehabilitation and moving forward.
Happy Easter to all.
Update 11 July 1999 -Trip to My Old Home Town
Well, it has been almost 11 months since my first two surgeries and four months since my last surgery. I finally made plans to go back to my old stomping grounds in NJ and visit friends and family. I was apprehensive as this was my first airplane ride in 14 months but other than getting a slight headache, the plane did land an hour later than scheduled.
My schedule was quite busy as I wanted to see so many people that I should have probably taken more than one week. I went to lunch with old company friends, met with two managers at corporate headquarters about my position in the company (they are terminating me on July 15 and I'm trying to change that), had brunch with family members, went to lots of BBQ's, went to dinner at my favorite restaurant with 11 caring friends, saw three old high school friends that I haven't seen in 29 years, and sat for two whole days in my friend's swimming pool as the temperatures hit above 101 for two days straight (I apologize if I missed anyone). All in all, while very tiring, it was so much fun to see everyone again. Of course, I crashed most nights at 10pm or earlier and didn't start my day until 10am or later.
Igot lost almost everywhere I went and the disorientation came on quickly even though my good friends gave me great directions. I kept my calm and was late to almost every appointment, but started to learn my way around slowly. It's funny that the memories you lose are so unpredictable; here I lived in NJ for over 40 years and just didn't remember how to get where. My friends understood and made me feel so comfortable about it the common joke of the day was "OK, where did you get lost today and how long did it take you'"
Ispent almost every waking minute visiting friends and my heart goes out to them. They were so happy to see me it again made me realize that while life has it's unexpected; friends are always there to help you out in your time of need. I felt joy in seeing them and glad that I could show them how I have improved since that nightmare evening of my seizure of August 17, 1998 (I fell once and joked that I'm still learning to walk again). I have been very lucky that I have had the BEST support system that anyone could ever expect, and they still overwhelm me with their caring, love, and affection... and for that I will be eternally grateful. I survived because of them and the strength within myself.
Istill volunteer at a local hospital at the in-patient rehab floors for brain surgery, trauma and stroke victims. I am responsible for pet therapy on Thursday afternoons and have come to love these caring and docile dogs. They bring such joy to the patients. I also volunteer as a role model for brain surgery patients and their families on a needed basis. It helps them to talk with someone who has been through an ordeal similar to their own and watch their recovery week by week.
Lastly, I came home from my trip weary and tired, only to find another denial from social security disability. I guess it's time to call my lawyer again and request a hearing.
Keep smiling. . . it might make someone's day.
Update 1 Nov 1999
My speech therapy was discontinued in late July. I am still having difficulty with recall, memory, concentration, comprehension and high level skills. I have learned to make signs around the house so that I remember the things I have to do on a daily basis. I also now keep two calendars and have lots of challenges keeping them in sync [g]. Due to these issues and the constant headaches and tiredness, my neuro psych doctor has informed the insurance company that I will not be able to consider working for at least another year at which time he will do another Neuro Psych Evaluation to see if there is any improvement.
Iam still working on Thursday afternoons with Pet Therapy and assisting in the Role Model Program. In October, the Center for Independent Living celebrated Brain Injury Awareness month. We designed brain injury bookmarks which were laminated and distributed. Many thanks to those too numerous to mention for their many donations; but to say the least, it was very successful program. Our Support Group handed out over 750 bookmarks and we are still getting requests for more.
On November 19th, the survivors will attend a "Heads Up" seminar. Our Support Group will all wear special badges and will be recognized as "Survivors" at the end of Dr. Claudia Osborne's Key Note Address. If you are not familiar with the name, Claudia was riding a bicycle, hit by a car, and sustained brain injury. She wrote a book called "Over My Head" about her recovery process and now lectures all over the country with her Mom's assistance.
Having past experiences with rehab and recovery, Lee Memorial Hospital has asked if I would like to write a "Sensitivity Training" for their staff working with Brain Injury to be part of their training program. With the help of the inpatient rehab marketing director, we will try to create a program that addresses brain recovery do's and don'ts.
Now for the questionable news - I flunked the TB skin test in f having to discontinue the meds and I am no longer on TB meds. My doctor has been trying to contact the hospital to find out what type of TB I was in contact with during my brain surgeries and to date has not gotten the information she requested. She informed me that she will supena the information in the next few weeks so that she can document what type of TB I was in contact with in my file.
Iwent to see my local neurosurgeon in late October and told him of my constant headaches, fatigue, and skull pain and separation. He was unaware that my neurologist has been treating me for headaches for several months. Before he does another surgery to put my skull back together, he is requesting several tests for osteomyelitis as he feels I "might" have a simmering infection in the scar. I should get back the results in the third week of November.
I'm happy that I have met so many friends from this site; their support is never ending.
Update 7 Dec 1999
I'm still working as a volunteer in Lee Memorial Hospital handling Pet Therapy every Thursday afternoon and loving it. Happily, we have had only two aneurysm surgery patients since the inception of the Brain Injury Support Program as we know, not one of us would "wish" brain surgery for anyone.
Many of us attended a "Heads Up" seminar in November 19th. Each of us wore a special badge and were recognized as "Survivors" at the end of Dr. Claudia Osborne's Key Note Address. If you are not familiar with the name, Claudia (a former doctor) was riding a bicycle, hit by a car, and sustained brain injury. She wrote a book called "Over My Head" about her recovery process and now lectures all over the country with her Mom's assistance. It was a wonderful seminar with a very upbeat speech by Claudia about hope and acceptance and lots of new information on brain injury.
At the request of the Rehabilitation Staff Training Manager, I have completed the "Sensitivity" seminar for Lee Memorial for their staff working with Brain Injury survivors. I am waiting for the final review from a doctor as to the flow of the training materials as my sequencing skills are not what they used to be. While this was a difficult task for me and took me 1-2 months to complete, I'm very glad that I hung in there. It's great for my self-esteem to have completed something of this depth. Through the recovery experience of myself and others, it details the trauma of loosing one self and how to assist in the treatment and recovery of any brain injury.
Afew months ago, my Dad and I have reconnected again and are enjoying our time together. It's nice to have him back in my life.
Lately, I have been having balance issues, more recall and memory incidents which makes me feel as if I'm going one step forward and two backwards. For the past four months, I have been getting frequent severe headaches and skull pain. I've also noticed that I am having a terrible time with my vision and have made an appointment with my opthamologist this Thursday. After so many recent x-rays, nuclear scans, CT scans - the good news is that I don't have osteomyelitis, but the local doctors have no answers. All recommended that I go back to Dr. Day as he has the expertise in AVM's.
As if the recovery process is difficult enough, I wake between 1-3am with a violent headache in my right temple and am unable to get back to sleep for hours. This not only results in lack of sleep, but some terrible pain that even the Fiorinal and ice packs do not calm the headache. After faxing the tests results and the pertinent information, I called to make an appointment with his assistant. She said that Dr. Day was not surprised that I requested another appointment with him due to the complication of the surgery and post surgery. My last visit to Shands was in February 1999. Hence, I am scheduled to go back to Shands Hospital to see Dr. Day on December 16th. I hope he has some answers for me as the many prescriptions I have tried hasn't help to relieve the pain.
Iwould like you and your family to have a wonderful holiday season and a Happy New Year. As all of us in this family of support, I'm looking forward to the year 2000 as a banner year for hope, health, and friendship; and hopefully a little less chaos for myself. All my best wishes and love,
Update 18 Dec 1999
On Thursday, December 16th, I left my house at 9:20 am to be at my Dad's by 11:00. We were heading back up to Gainesville to see Dr. Day, my neurosurgeon at Shands Hospital, for a consultation. Unfortunately, due to a lost lunch order at the restaurant and back-up on I-75 for 45 minutes or more due to construction, we arrived a little late for my 3:00 appointment. Thank goodness for cell phones as I called from the car to inform Mary we were on our way. After asking two different hospital personnel how to get to the neuro-surgery office (you would think that after all the time I spent at Shands I would remember how to get to my surgeon's office [g]), we arrived at 3:25.
In I walk with all of my latest CT scans, nuclear medicine scans, head x-rays, copies of my vision tests for the past two years, and a document listing my top 5 issues since my AVM surgery. I signed in and saw Mary, Dr. Day's secretary, who immediately came out to say hello with a big hug and a warm smile. There's nothing like having a friendly face to greet you and relieve some of that pre-visit anxiety.
Armed with all of this information, I had great hope that Dr. Day would finally tell me what was going on inside my head. I prayed that Dr. Day would come up with some fix for my terrible headaches and my loss of vision. Against all odds, I was hoping that if anyone could fix these issues, he could - after all, he saved my life! After reviewing all of my films, evaluating my scar and asking me particular questions; he had the following information:
Iwas certainly saddened by this news. While I truly understand that there are others who have more post surgical issues than I, living with these headaches and continued vision loss is not quite the quality of life I desired. Hopefully, this new neuro-ophthalmologist will be able to find out the cause for my vision loss and if that can be addressed, my headaches might diminish as well.
The highlight of my visit with Dr. Day was the big hug that he gave me at the end of our visit. He is a special person and surgeon. Mary stopped by to say she would be talking to me soon, told me that I looked wonderful, and gave me another hug (actually two hugs). She truly understands the changes that have occurred in my life; but gently reminds me that I'm here, alive, and while I am not able to work, I'm helping others. As I said before, a very caring woman!
Our trip back to Sarasota took the normal 2.5 hours. Tired and exhausted, I stayed over in Sarasota and drove home on Friday afternoon in time for my daily nap.
Iam working on getting my spirits back up while realizing that I have to be realistic. This specialist may or may not be able to help me; but I have to try. Many thanks to those special friends who have given me hope during these past few months; they have helped me tremendously.
Iwish all a Happy Holiday Season and pray that the year 2000 brings continued recovery, sunshine and a smile each and every day.
Update 16 Jan 2000
Lisa Jones (The Miracle Kid) and I met in Marco Island on January 3rd when she came to Florida to attend her sister's wedding. It was so nice to meet another survivor who I communicate with through this wonderful support group. This picture was taken with with Lisa's Christmas gift from her brother, a new digital camera. We looked at several takes, deleted them and then decided on this picture. Notice the two of us have braces [g].
Ialso got a new Shih Tzu puppy on January 7th. She is only 2 pounds and will only grow to 7-8 pounds. I named her Li Ming which means beautiful and bright in Chinese. She is smart, loves people, and has taken it upon herself to chase the cats around the house. I will be training her for Pet Therapy at the hospital where I volunteer each Thursday. Getting this puppy was the best thing that I did for myself since my surgery. She brings brightness and constant joy with her affection every day.
Ihope sometime soon I will be able to meet more of my cyberfriends. I wish sunshine and love in each day for all of you.
Update 2 Mar 2000
Dr. Day recommended two neuro opthamalogists, Dr. Schatz and Dr. Glaser who are both well known with wonderful credentials and the best in the Southeast. I called to make an appointment and was surprised to hear that I could get an appointment immediately. Since my HMO requires authorization to see any doctor out of my area, I made the appointment for 2 weeks from the date of my phone call. After getting the proper authorization, I went to Miami on Wednesday, February 16th, to see Dr. Schatz. I guess I was expecting too much; I thought I would learn more about the loss of my vision. The trip took 2.5 hours there and 2.5 hours back.....a total of over 360 miles with lots of highways and a few missed turns [g].
Iwas in the doctors office for almost two hours. Dr. Schatz was asking me questions and when I said I didn't remember.....he got upset. He told me that I was not making it easy for him; but I truly don't remember the answers to some of the questions he kept asking me. After interrogating me for awhile, he examined my eyes, vision tests, etc....lots of drops and then took me in for a vision field test (after my eyes were dialated). He tried to get a lens that was closest to my prescription - don't ask why no one does this field of vision test with my contacts (-: and tested both eyes. This first set of tests showed what all of the other 3 previous tests, loss of peripheral vision. He then experimented with my left eye with no lens (not my right eye which is the one that I lost my peripheral vision ); and of course I can't see much of anything. He tells me where to look and asks me why don't I press the button. He then decides that the rim of the lens they put in front of your eye to take this test interfered with the test and that is why everyone thought I lost my peripheral vision. Of course, my loss of peripheral vision is mostly in my right eye....and he can't explain why I keep bumping into people and objects that should be visible with my right peripheral vision. He felt it might be a balance issue.
After the first hour of feeling like I was being interrogated, I told him that MOST (actually all) of my doctors really liked me (just to let him know I didn't think he was treating me appropriately) and he said he liked me....but most patients don't like him because he is persistent. He then left me to take the test. He said he would now read my files (stacks from Dr. Day, my retinal specialist, my eye doc, etc).
After that test, he looked at my optic nerve in my right eye with some special lens and lights and said....gosh or something to that effect. It appears that I only have 1/2 of my optic nerves in each eye since birth....another congenital defect! But he never told me the effects of that issue.
He started dictating the letter to Dr. Day for the next 20 minutes. After he dictated, he turned to me and said that he doesn't think that my vision/sight is the issue but rather that my brain is not working properly in feeding back the images that my eyes sees. He told me that due to my headaches, lack of sleep, and depression; he is recommending to Dr. Day that I go to a pain clinic in Miami as an inpatient so that they can find meds which will help me sleep and limit my daily headaches (or at least lessen them) so that my brain gets the rest to allow my sight to be properly be fed from my eyes to my brain. I don't want to go to any hospital; especially as an inpatient and two hours away from home! Of course, depressed me started crying right then and there. He mentioned that there is a wonderful doctor in Miami that has an inpatient pain clinic so that they can monitor changing my meds and watch for seizures (I've had three in the past three months).
Iasked him about lasik surgery as that could cure my astigmatism as well as correct a good part of my vision, and he said that would be putting the cart before the horse. On any given day my vision is affected differently and even with the surgery, it was too soon until we resolve these other issues. He also mentioned that he would try Elavil. I informed him that my neurologist had tried 10 mg of Elavil for the first three weeks and then upped it to 20 mg. Due to the fact that I started having nightmares which made the ability to sleep less that without the meds, we stopped the Elavil. It appears that there is only one other med that he thought might work; I forgot to tell him that they tried cortisone for 10 days as well and that didn't work either.
My Mom asked me if the inpatient pain clinic would relieve my headaches why wouldn't I go....I told her too many hospitals! She said that by time he sends out the letter and talks with the doctors, it would be awhile....and then we would have the problem with authorization of the pain clinic in Miami. I cried all during lunch and halfway home.
This doc didn't truly understand that my AVM was post bleed and my vision was affected before the AVM surgery. He didn't understand the post effects of the seizure and surgery and that my memory was affected as well. Well, I was angry and even more depressed than I was before I went. All I really understood from this doctor was that it wasn't something I had no control of, but it was my brain that was not functioning properly.
Igot in to see my neuro psych doc the next day as he rearranged his appoinments at the hospital. He told me that I do not call for any emergency so he was really concerned when I called his office. He sat with me for 30 minutes until I vented all of my anger and frustration.
As of today, Dr. Geiser and Dr. Day have not yet received any report from this specialist in Miami. Maybe he's waiting to see if my insurance company will cover his costs as he seemed concerned about how I was going to pay for my visit. I informed him that I had authorization from my insurance company for one visit and I gave that authorization to the secretary when I walked in. Well, so much for my experiences in Miami. At this point I do not know if I will see another specialist who will treat me as a person and I feel confident in. I will have to think about that.
Good News.....I have been finally approved for disability. I went to a hearing which lasted 45 minutes and the judge told me after the hearing that he felt I was unable to work. Now all I have to do is wait (about one month) for the official letter from the judge -:).
More good news - my puppy (Li Ming) is now 3.5 pounds and is growing. Of course, when I give her the weekly bath; she looks like a drowned rat and not as big as she looks with all her fur. [g] She now understands sit and stay...so we're making progress. Of course, she still chases the cats and I haven't been able to cure that yet. I called to sign her up for the next puppy class so that I can learn (not her) how to train her properly. This class starts March 22 for eight weeks.
My thanks to all of those survivors who have helped me get through this ordeal. Without them and Dr. Geiser, I would probably still be a basket case. [g]
Update 1 Sep 2000
It's hard to believe that time goes so quickly; I didn't realize that my last update was in March. A lot has happened since then.
My puppy, Li Ming, is now almost 10 months old and has grown to her full weight of an overwhelming 8 lbs. 2 oz. I started her at puppy school at 4 months old and she has graduated the first two classes. She is now in intermediate obedience classes and will start agility training in late September. At four months old, I started to take Li Ming to the rehabilitation hospital every few weeks on Thursday afternoons to get her used to the environment, the other pet therapy dogs, and the patients. As the Pet Therapy Program was receiving such good reviews from the patients, we started going on Monday afternoons as well as Thursday afternoons. Li Ming is now working every Monday afternoon for the past three months bringing lots of wet kisses and smiles to patients. Not surprisingly, the patients ask for her on Thursdays as well. A proud Mom!
About three months ago, I asked if we could get special shirts for all the owners that worked in the Pet Therapy Program. While it took awhile getting approval from the all those necessary at the Rehab Hospital, we received final approval. Anne (who owns a Rottweiler named Harley) and I designed new shirts for the pet therapy program. Each shirt has a picture of their dog on the front as well as The Pet Therapy Program at the Rehabilitation Hospital. It took several weeks to get the orders completed, but we got rave reviews from the entire hospital staff. Now when we walk in with our dogs on Monday and Thursday afternoons, every one recognizes us as owners volunteering our personal time for this therapeutic program.
The Brain Injury Role Model Group was initiated after several months of preparation. To date, we have helped over 10 brain injury survivors through difficult times. I have had to expand the original group of survivor volunteers as we are now including stroke victims to our existing aneurysm and AVM survivors. I have been meeting with an aneurysm and stroke survivor named Stacey and her sister once a week for almost three months now. It is very satisfying knowing that we are helping people and I do not coordinate more than one survivor with a Role Model Volunteer so as to not tire out our Role Models.
In July I went back to New Jersey to see my friends and relax. We had a very relaxing time (yes, I have learned how to pace myself now) and I got to meet all of them during the six days I was there. It was also a very exciting time for me during this week. I had my High School Reunion (and for those that don't know me, I'm not going to tell you what year I graduated [g]). As I was walking into the Marriott where they were holding our reunion, I started to walk into the first door with the Reunion sign. I looked and thought to myself that these people look old. Well, I looked back at the sign on the door and realized that there were two Westwood High School reunions at the same hotel and this one was for those that graduated ten years before me. Whew! I was beginning to think I was looking pretty good for my age [g]. When I finally found my class, it was difficult to keep up my courage to visit with them; but I did. I only recognized one girl in my class as we used to double date together during high school. While the faces of some of my classmates looked familiar, I did not remember any of their names. Thankfully, Linda came to the rescue and told me each person's name as I spoke with them. I got so many hugs and kind words from all of my old classmates. Evidently, word got around my graduating class very quickly about my brain surgery and stroke. There were many friends there that I don't remember due to my long term memory loss; some of them told me that they lived on the next block, others would recount funny episodes, and others just told me how I was their hero. Can you imagine' I never felt like a hero before; but they were all glad that I was able to go to the reunion for a short time. While I leaving the hotel, I ran into my oldest friend, Jeannie. We have been friends since we were in kindergarten. We have been communicating for over a year over the internet and haven't seen each other in years. Jeannie brought some of the pictures of both of us growing up and it was wonderful to see her. She is moving to Port St. Lucie about 2.5 hours north of me. I also met up with some of my classmates that live in Florida and have renewed our friendship by communicating with them via the internet.
As a survivor, I was asked by the hospital to give a presentation on working with brain injury survivors to the case managers and any other rehab staff members that wanted to come. In August, I gave my first presentation to over 25 staff members. Their MIS staff there set up my presentation on a PC with an overhead screen so that it would be easier for me. I was very nervous and when I forgot why I put some of the tips into my lecture, I just went on to the next item. I did remember the humor though and did get a few laughs. At the end, it felt like I really accomplished something. Everyone thought it was very educational and interesting; I have been asked by the staff to give the same lecture to other staff members that were not able to come and another presentation to stroke survivors and their families. You just never know when life it going to give you opportunities that you never expected.
In August my Mom and I went to Wisconsin for my niece's wedding. While it took us over 12 hours to fly from Florida to Wisconsin and one bus ride, we finally made it to the hotel to check in at 12:30 a.m. We were to arrive at 4:30 in the afternoon. You know the old adage "This is no way to run an airline", well, they are certainly living up to that! I had the opportunity to spend some quality time with my brother (I hadn't seen him since he came to Gainesville for my surgery), my sister in law, my niece and my nephew. The wedding was just beautiful and of course, my niece had the radiance of a beautiful bride. I also met some of my brother's friends who told me how many prayers I got from the Midwest and how scared my brother was during my surgeries. I met one friend who is like a brother to my brother, and it was endearing to hear how he helped my brother by talking to him every day to help him through my difficult times. We had a great time but I was glad that we were heading home. Luckily, we made in home a few minutes earlier than scheduled, and I'm still recovering from the trip [g].
Now on to my health. I had a consultation with another neurologist a few weeks back. After talking to him and explaining about the tingling in my right hand and the right toe that hurts terribly prior to my headaches, he thought I might be having larval seizures. He increased my anti-seizure meds in small increments until I got up to 350 mg of Lamectol. This seems to help my headaches. While I still have the headaches, they are not quite as painful and don't seem to last for days. This increased medication dosage has not helped my skull pain; but thankfully, Fiorinal eliminates most of that pain.
Iam still having some dramatic long and short term memory issues; but my family, friends and pet therapy friends help me. The bad news is that my vision has decreased again. This is the 6th change in less than 15 months. As you can imagine, I'm very concerned. Next week I have an appointment with another neuro opthamologist near Miami. My neighbor and her family have been seeing this doctor for many years and she got the appointment for me. She told me that Dr. Hoche is a great diagnostician and if he can't help me, he will put me in contact with someone who can help.
I'm happy that I have met several through this site several survivors who had their surgery at Shands Hospital in Gainesville and know Dr. Day and Mary Eckert. We communicate to each other about their compassion and patience. When I spoke with Mary earlier today, she mentioned that one of her patients told her that she on the internet. She asked me where she can find out where all this talk is coming from. I told her that I communicate with several of Dr. Day's patients and we all talk about how much she has helped each of us with her smiles and understanding. She was overwhelmed.
Ipromise I will try to keep you updated more often. Thank you to all those friends that I have met through this site. With their understanding and friendship, it helps those dark days bloom into sunny times.
Update 20 Dec 2000
It's been a few months or more since I've updated my story. While I've thought about writing it several times, I just didn't either seem to have the energy or the time in that flash of memory [g]. I have to thank those family members who have helped me celebrate the small successes of triumph and help me get over those little bumps in the road with smiles, e-mails, and e-cards. Friends sure make a difference in getting through those twists and turns of life.
Ihave a lot of information and I can't guarantee that the order I will detail it will be in any logical order; but at least I can get out what has gone on with my life in the past 4-5 months. I saw a neuro ophthalmologist, Dr. Hoche in Hollywood, Florida, who was recommended by ing. As to my vision getting worse, he told me he felt the only option I had at this time was to look into lasik surgery as this new procedure had a great success rate for someone of my visual weakness.
Ialso saw a neurologist specializing in headaches several times. After reviewing my files and examining me, he felt I was having partial seizures so he upped my dosage of Lamictol from 200 mg/day to 400 mg/day. This seemed to have some success in reducing my headaches for awhile. Unfortunately, once I got to 400 mg a day, I was a zombie and couldn't function at all. So both of my neurologists agreed to drop me back to 350 mg/day. This worked for about three weeks until I started having break-through seizures. I called my neurologist. Dr. Driscoll, and got in to see him and told him I had at least three seizures in a period of less than two weeks. While I do not pass out and I am very conscious during these partial seizures, it is disturbing to have the right side of your body shaking for about a minute or so. So we discussed alternatives and we agreed to try a new med called Zonegran. Since the combination of Lamictol and Zonegran seems to work, we are trying to wean me off the Lamictol and go to Zonegran 400 mg/day within the next week. I sure wish my body wouldn't get used to these meds so quickly . . . . I don't think the pharmaceutical industry can keep coming up with new seizure meds at the rate I'm going [g].
The good news!!! Yes, there are several good bits of news! I got my braces off in September and now have a removable retainer which I have to wear for one year. To celebrate, my friends made a BBQ spareribs and corn on the cob dinner that was just yummy. I think I ate two years worth of ribs and corn and it felt great. I also had lasik eye surgery. I went to a corneal surgeon who was recommended by the doctors at the hospital as well as my ophthalmologist and was not only excellent but very cautious. Due to my poor eye sight, he corrected my vision to 20/200 in my left eye and 20/50 in my right eye. One week after surgery, my left eye had healed to 20/50 and my right eye was still 20/50. My ophthalmologist worked with me to find a contact lens for my right eye to help my distance for driving (especially at night) and we have finally found a lens which helps tremendously. And it only took three lenses to find one that worked. I'm so excited. It's just amazing that even when my brain is not functioning properly, I can still see.
Li Ming turned one year on November 19th and continues to visit patients every Monday afternoon at the hospital. Due to the expansion of the pet therapy program to two afternoons a week and two of us volunteers battling illness and constant headaches, I have recruited two new volunteers to assist. This will give us a total of four volunteers to handle two afternoons a week and will allow me the opportunity to not feel guilty if I don't feel well enough to go one afternoon. Anne and Harley, Ann and Jana, and Li Ming and myself are now covering Monday afternoons; Anne and MaryAnne are the volunteers who can cover Thursday afternoons with the other pet therapy dogs.
Ihave also found and been approved for a medigap insurance company that will cover what Medicare doesn't pay, is halfway affordable, and starts on January 1, 2001. The only issue now is the payment of my meds which as we all know is not covered by Medicare. The last good news is that I have lost 8 pounds in the past two months - Thanksgiving included [g]. Yes, it is difficult; especially with all the meds I am on. But with the help of my neighbor/ friend, Cyndie, and her nutritionist, I have learned to eat low calorie, low fat foods and be able to eat healthier. I also baked cookies and didn't even eat one while baking.
After 4 months of waiting, I finally received authorization to see a reconstructive surgeon that Dr. Day, my neurosurgeon, recommended. I went to Gainesville to see Dr. Caffee this month and to see if there was anything he could do to repair my skull and rectify my skull pain. It has continued to get worse and there are more days than not that I am taking pain meds. Dr. Caffee is an excellent surgeon, Dr. Driscoll knows him as well, and spent a lot of time with me. He said that my skull has now healed together and my brain is protected; but the bones grew together unevenly. There is this new bone/calcium mixture that they can use on your skull with a screen to repair the bone. So my surgery date is set for January 9th with January 8th at pre-admission testing at Shands. Dr. Day will also be available at the hospital on my surgery date in the event that I have a seizure just to ease my mind. Dr. Caffee is aware of the seizure disorder and made special notes in his files about precautionary measures. So in the new year, I will be getting another shave. They say the third is a charm. . . I'll have to let you know :-).
Have a very Happy Holiday. I'm so grateful to be a part of such a special family. Special Blessings for a Healthy and Happy New Year.
Update 4 Jan 2001
My surgery date has been set. My skull plate has finally healed together (although not evenly) and I will be undergoing another shave [g]. My neurosurgeron has recommended a reconstructive surgeon at Shands in Gainesville and he has concurred that I require another surgery. I have my pre-adm on Monday, Jan 8, and my surgery on Tuesday, Jan 9th.
Iwill probably be in Gainesville for a period of 4 days and will require several days of recovery. Therefore, I will be off-line from Jan 7th through Jan 14th.
Hopefully this is my last and final surgery. They say the THIRD is a charm.....I'll let you know.
Update 10 Jan 2001
On Tuesday, January 9th, while waiting at the hospital to be called for my 10:30 a.m. surgery, my insurance company denied authorization at 9:30 for my reconstructive surgery. What an emotional roller coaster ride that began.
Icalled CIGNA supervisors myself several times yesterday to beg them to reconsider; my Mom was on the phone with them for hours talking to a supervisor and getting the name of the directors with no affects. I was so angry and hurt that I told them the newspapers and my lawyer would hear about this. My Mom was so upset that she told them the Senators would all get a letter about this.
Dr. Caffee's office faxed in the paperwork for authorization on Friday, December 29th, and when they did not hear anything from CIGNA started calling them and speaking with many different individuals daily. They were told it was under review and finally told it was under review by the one of the Medical Directors on 1/5. When they asked to speak to the medical director, they were refused. To make a long story short, CIGNA did everything they could to stall the authorization process until the very last minute (I was almost on the table) and then denied it. As CIGNA took almost three months to get authorization for me to see Dr. Caffee for an evaluation (as referred by my neurosurgeon) and knew that my insurance was expiring on January 16th, they took this into consideration as well. And yes, after reading Dr. Caffee's report could have made it clearer that it was reconstructive surgery to repair skull separation to eliminate skull pain so both are at fault here. But he did mark it as conventional surgery, not optional. But in the end, the patient suffers.
So after many days of anticipation, too many months of skull pain and headache pain, and too many tears, I'm now exhausted and angry.
Iam going after CIGNA....yup, I'm asking for letters from Dr. Driscoll (who has been documenting for almost six months the skull pain and his request that I get this skull surgery done) and Dr. Day (who referred me to Dr. Caffee) and I am sending all of my medical files from my AVM surgery forward to the Florida Insurance Board in Tallahassee and going after CIGNA for their mismanagement in the care of one of their customers (ME!)
Iknow and appreciate all of your support (especially my Dad who drove three hours to be there for my surgery; Judie who listened to me rant and rave last night and finally gave me the needed kick in the butt to tell me that "this happened for a reason" and how it was probably that it made me angry enough to rally against one insurance company and how to do it by going to the Florida Insurance Commission; and my Mom who came with me and tried her best to get this resolved and put up with my tears and anger on the ride home).
MY LAST REQUEST..... I need time free of emails. I need sleep and release of pain and just time. I don't know how to go forward right now....but after some rest and a few pain free days, I'm sure I will figure it out. And of course, I have to go through my medical files and write some letters which I need to be able to think clearly to do.
Thank you for your help, understanding, and just being there. I will talk to you soon.
Update 2 Mar 2001
It took me 5 long weeks, but I finally got a 5-page letter and 25 pages of attachments sent off in the beginning of February to the Florida Agency for Health Care Consumer Assistance Program to appeal CIGNA's decision for my Y-cranioplasty. I included letters from my local doctors as they all felt I needed to have this surgery. To date, I am still awaiting word from them.
Li Ming, at 15 months old, passed her CGC (Canine Good Citizen). She is now going through her final phase of observer status and will then be a certified pet therapy dog through Therapy Dogs Incorporated in Wyoming. This will allow her to be insured at a very low cost and to go to any hospital in the United States. Mom's so proud [big G].
In early February, I received a phone call that I was one of five finalists for Person of the Year with disabilities. What a shock and a wonderful surprise! This is truly an honor. It is sponsored by Good Wheels and has been run for the past 7 years for volunteers with disabilities. I was invited to a luncheon on Monday at the Shadow Woods Country Club in Estero along with the other nominees where they would announce the winner. My Mom, her friend Mary, my friends; Judie, Dottie, and my pet therapy friends; Anne and Bill, all come along. We had a wonderful luncheon with some great food [g]. The winner was announced - Reverend Kenneth Thibodeau of Fort Myers who with one leg and limited vision and hearing was recognized for all his work with veterans as Chaplain of an American Legion Chaplain. What a wonderful and dedicated man. His accomplishments are truly amazing! The article is available at: Good Wheels
Due to this, I was interviewed by a local TV station for my AVM/Aneurysm web site. Kadi Hendricks of NBC2 news along with Rudy (her cameraman) came to my house on Wednesday, February 21. Jeez, was I nervous! Due to Kadi and Rudy, they made everything so easy that we worked through most of my jitters and made I made it through. The segment aired on Monday, January 26, after they announced the winner with a one minute segment. Our family's web site made it on the local TV station as it is the first link on my AVM/Aneurysm web page. This segment makes people more aware of AVM's and some of the after effects of this congenital disorder. Of course, Li Ming and Seti made their TV debut - and I must admit, they were more relaxed than I :-). You can see the clip at: Good Wheels
On Friday I go for an Arthogram for my shoulder to find out what is causing me such discomfort (no one here has a small MRI) to find out if I tore a rotator cuff, and next Tuesday I go for a CT Scan with and without contrast to see if they see any changes in my skull. Otherwise, Li Ming and I spend our time at the hospital visiting patients and making them smile .
I'm back online and smiling again. Thank you, my extended family, for all their support during the past two months. I've made it through with their help and understanding. Happy St. Pat's Day!
Update 5 Jun 2001
Alot has sure gone on in the past three months; life is certainly never dull here. After going through two cortisone shots, an arthrogram, a spinal x-ray series and CT scan, and an EMG; the doctors determined that the pain in my right shoulder down my arm into my wrist was a result of my brain surgery and stroke. During the time of these tests, my orthopedic and neurologist sent me to physical therapy two times a week which gave me some temporary relief. While speaking to another stroke survivor and pet therapy owner, she gave me the name her therapist. That was the best thing that happened! MJ is infamous in this area and her specialty is myofascial release therapy. I gave her name to both doctors and they said, Wow, why didn't we think of MJ' She's had excellent results with chronic pain . So I started myofascial release therapy with her two weeks later and have to admit that it's the best thing I ever did. While the therapy the first week was painful, I wish I could package her up and bring her home with me. I am starting to feel better each week and am down to one pain pill a day vs. the three I was taking before seeing her. She discovered during my therapy that evidently something happened during my grand mal seizure in the hospital after my stroke that injured my neck and right shoulder blade. She also feels that my brain started shutting down my right side to protect it from all the falls that I have had causing my muscles to tighten so that they pressed on all of my nerves. Thankfully, MJ is helping me.
Two months ago I went to my eye doctor and eye surgeon for a six month checkup after my lasik surgery. My eyes are doing very well; my left eye is 20/40 and my right eye is 20/70. There is no more surgery they can do. After leaving my eye doctor, I got the worst headache of my life. I drove immediately to my neurologist s office who was only 5 minutes away. Luckily I made it there and then almost collapsed at the desk. While my neurologist wasn't in that day, luckily Katrina was there and quickly got my into a patient's room, took my blood pressure which was much higher than normal, got me some ice for my head and water to drink, and got a covering doctor to see me. After the doctor talked to me, he felt it was necessary to get me to ER immediately for another CT scan (this would be my third in a 5-week period) due to my past history. So Katrina drove me in my car and had another employee follow her and got me into the ER quickly. They would not let me leave the ER until they determined that I did not have another bleed and spoke with the covering neurologist. What they did determine after talking to my eye doctor is that his office used only one dilating drop and used the anti-dilating drops afterwards, and I had a violent allergic reaction. You can bet I updated my Medic Alert immediately!
Li Ming had a health issue as well. After not eating for a few days and getting sick, my Mom took her to the vet for me (I had myofascial therapy and pet therapy). The vet was very concerned and took blood tests for liver and kidney disease and gave her a shot and pills for a week. She was restricted in her diet to Gerber's #2 chicken with chicken gravy and rice for a week. Her blood tests came back thankfully OK; but it was a stressful time. Yesterday was the first day back for her to pet therapy, and Li Ming was happy to be back working and making sick people smile again J.
Finally my fight with CIGNA Healthcare is over!!!! With the assistance of the Florida Agency Healthcare Administration and a kind gentleman named Mike Stockdale, CIGNA has agreed to pay for my cranioplasty with Dr. Philip Villanueva. Dr. Villaneuva specializes in cranioplasties, heads the trauma ward, and works with Dr. Heros (Neurosurgery Director) at the University of Miami / Jackson Memorial International Health Center. As soon as I get the authorization letter from CIGNA (due this week), I will make an appointment for a consultation. As MJ informed me, I will have to stop my myofascial release therapy for a period of 8 weeks after my surgery as this therapy affects your body's recuperative process. Hopefully, I will be able to have the surgery at the end of this month.
Lastly, my Dad has purchased a new computer for me with a nice big 18 viewable monitor. I love it! It is so nice to be able to work on my web site and answer my emails without straining my eyes and this new Dell is so fast; no more waiting for pages to upload [g]. Thanks Dad! In April I added a Spinal AVM and a Brain Map page; just last month I added a Seizure Disorder page. Of course, I m always updating my AVM/Aneurysm web page. Thanks to everyone who has helped me through those rough patches and especially to those who send me ideas for web pages. Keep those smiles; it makes people guess what you re up to [g].
Update 19 Jul 2001
As you might remember, I have been fighting with CIGNA Healthcare since January 9th of this year when they decided not to pay for my cranioplasty one hour before surgery. Well, great thanks to a helpful gentleman named Mike Stockdale of the Florida Statewide Provider and Subscriber Assistance Program. With his intervention and perseverance, CIGNA finally agreed to pay for a consultation and testing and if the surgeon felt surgery was required, the pre-admission and surgery. Of course, I think I threw a wrench into their works when I told them I wanted to go to another surgeon that I learned about in Miami which took them another few weeks to approve. In June CIGNA gave me authorization for consultation with Dr. Villaneuva valid for 2.5 weeks (I had to wait six months for CIGNA to finally come around and realize they made a major mistake); but Mike Stockdale told me that if I couldn't get an appointment in that time, he would get them to extend it. When I called, the first appointment I could get was six weeks away and when no one would return my call from CIGNA, I was back on the phone with Mike again. Thankfully, he did his art of persuasion and got an extension until the end of July.
Now you know my life is never boring. In June I had a severe abscess tooth that required 5 visits for a root canal and three antibiotic prescriptions. More visits will be required later on for a cap as my dentist feels it s best to wait another month. After spending over 2 hours at the dentist office, I came home at 3pm and called Miami to confirm my appointment for Thursday. What a surprise when I was told by the secretary that she was canceling all of Dr. Villaneuva s appointments for that day. I was more than disappointed and told the nurse that I waited six weeks for this appointment. She told me that she hadn't spoken to Dr. Villaneuva since early that morning and when she had a chance, she would get back to me as soon as possible.
Iwas finally called on Wednesday at 11am and was informed Dr. Villaneuva could see me on Thursday, at 9:30am rather than 11:30. Unfortunately, that meant having to get up at 5am to leave by 6:10am; but I wasn't going to give up the opportunity to meet this surgeon. I am no longer a morning person [g]!
Igot directions from MapQuest as well as several sets [g] of directions from Betty, Dr. V's secretary. I was stressed out, hadn't a clue as to where we were, and it was going on 9:10 a.m. and as far as I was concerned, hadn't a clue as to where we were and how to get where we were suppose to. With the help of a McDonald's employee, they gave us directions that got us back on the right track, but the exit they told us to get off didn't exist. So we got off on the 8th Avenue exit, turn right towards 41, and followed that until 12th and turned right. Some directional angel must have been helping us; because once we were on SE12th, I just followed it until NE12th and saw the Cancer Hospital on the right and knew the clinic was immediately after that.
Luckily the doctor was running late as well and there was only one other patient before me. I didn't know what to expect....I guess with waiting six weeks for an appointment and then the cancellation last minute; I thought this doctor was going to be more standoffish. Dr. Villaneuva was not! After seeing his first patient, he told me he had to make a call to "Trauma" (he is Chairman of the Trauma at the UM Hospital as well as Associate Professor, Lecturer, and Author) and then he would be with me.
He came to get me about 10 minutes later (himself)!!! My first impression; he was kind and considerate. When I sat down, he told me he read my files but he wanted to hear my thoughts and asked me a lot of questions as to when I had pain, what activities, etc. He told me that there were several kinds of meds for treatment of skull pain and went through the entire list. It turns out that I have been all of the list of meds that he gave as having tried them with either no results or extreme side effects, and the ones that I didn't have any problems with I am already taking.
Then he went on to describe and draw several pictures of the issues with loose bone flaps. One was if the bone flap was uneven (not level), it can cause pressure on the dura. If the bone flap is even but doesn't quite meet the other bones, scar tissue forms which also causes pain and pressure. The final is that the bone flap is together; but due to past surgeries, the dura is sensitive to all changes. He thinks I have either #1 or 2 of the above. He then gently examined my skull saying he didn't want to cause 3-day of pain like I had in January when I visited the other surgeon. Oh well....thank goodness for pain meds. Even after an hour, I was still in pain but it was slowly calming down.
He explained that he felt that the brain was contained in a box and if the box isn't completely closed, he has seen all kinds of issues. After all, he does this every day for a living and he's seen lots of head traumas and done many cranioplasty and reconstructive skull surgeries.
He ordered a 3D CT scan which I had at UM later that day. By having it done while I was at UM, he will have access to the films and report quickly. And He received the 3D CT scans late Friday afternoon and reviewed them at home over the weekend.
Ihave to admit, I was very impressed with Dr. V and really have great confidence in him and like him as well. When I had problems understanding his questions, he told me to take my time and asked them a different way. He even asked me when I wanted the surgery done. Of course, Mom said IMMEDIATELY; but I told him I needed about two weeks as I was scheduled for another root canal. He told me it was very important that I get it taken care of before my surgery (which I knew). He also told me that I need more antibiotics a day before and several days after the root canal for infection precautions, and he told me that I should take the next two weeks in getting it taken care of as well as get antibiotics before and after just to be sure.
While it seems that I have been forever working on this (at least one year), I am glad that I kept listening to my body and researching to find a surgeon that might be able to help me. Not only that, if I can have the surgery done, Dr. V has told me that he has seen 80% decrease in his patients in seizures or other neurological symptoms.
In either case, he feels that while the surgery can be risky with my history; he feels that it might be well worth the risk as the pressure on the dura can be causing more seizures as well as other neurological problems that I have been contending with. He said in 80% of the cases where he has done reconstructive skull surgery, he has seen improvement in either seizures or neurological impairments. He also feels that it is important to do everything right the first time, so he would plan on covering the dura, if he is unable to use the existing bone flap he will use a titanium plate with a special glue that will allow my bones to grow. He will not use the methyl methcrylate.(or as I call it "bondo ) that was used in the past as my body absorbed it and will not use cadaver bone as he has found that if someone will not accept the methyl methcrylate, they will not accept the cadaver bone. He has also found that in some cases, a patient will even reject their own bone flap once it has been taking out, saved in saline solution during surgery, and then replaced.
Iwill be going to Miami on Monday, July 30th, for pre-admission testing and then my surgery is scheduled for Tuesday, July 31. My surgery will be at:
JACKSON MEMORIAL
HOSPITAL
1611 N.W. 12TH AVENUE
MIAMI, FLORIDA 33136-1094
305-585-1111 (General Info)
I'm suppose to be in 9West; but if there are no beds, I'll be on the 8th floor. I will be in ICU the first evening after surgery (the 31st) on the 8th floor and then moved to the 9th floor. Dr. Villaneuva hopes that I will be able to leave the hospital in 4-5 days so I hopefully I will be home by Friday or Saturday, August 3rd or 4th.
Update 12 Aug 2001
According to Dr. Villaneuva, my surgery on July 31st was a success! Yippee! My pre-admission tests had one bump in it as my EKG showed the typical inverted T-waves that I was born with; so some last minute phone calls to Shands Hospital for copies of my last two surgeries EKG's to be faxed to Jackson Memorial before they would approve the surgery. Thankfully Mary from Dr. Day's office got the information faxed very quickly to Jackson Memorial and after being reviewed by the cardiologist on staff and Dr. Villaneuva; the surgery was approved. On Tuesday, July 31, Mom, Dad, and I arrived at the hospital at 6am for my scheduled surgery at 8am. I was taken into the setup room for pre-op and left there for almost an hour. They finally allowed my parents to come in to see me as they told them it would only be about 20 minutes. The nurse tried to install an IV line and after it didn't take, told me that they would install it when I was in the OR. This would be the first of 4 IV lines that I would have. Another glitch surfaced - they didn't have the necessary surgery approval forms signed and had an intern bring the form in for me to sign. He went through the entire "issues" of the surgery and I signed the form and told him to let's get on with the surgery as 8am was coming quickly. He told mted and get it over with and it was taking too long to get this surgery started. I was to meet Dr. Villaneuva before the surgery, but that was not to happen. I did get to talk to him on the telephone at 8:30 the night before and asked all my questions so let the surgery begin.
Dr. Villanueva told my Mom that he was very happy with my surgery. He said that my bone flap was sunken but the bones were so good (thanks to all that Fosomax and Calcium with Vitamin D) that he didn't have to use a titanium plate but used titanium clips to connect the bone flap together to the remainder of my skull after covering my dura with some Duratin to protect the dura from more damage and scar formation. He then used some type of glue that allows your bone to grow and sutured my entire length of my initial scar. I go back to see him for suture removal on 8/15. In the meantime, I'm still on restrictive activities (no driving, no heavy lifting, no strenuous activity), on pain meds every four hours, get home nurse visits every other day to check the sutures and change the bandages, and awaiting speech and physical therapist visits.
My surgery lasted approximately 3 hours and when it was over. I have 43 sutures down the center of my skull and across the back of my left side of my head to the back of my ear. I have some difficult walking and talking; but getting around well with quad cane (talk about feeling like a little old lady) [g]. I get home PT about three times a week as my right leg is very weak but right arm only partially weak. Goes to show what working out before surgery can do [big G]. I also am currently getting home nursing care about three times a week. Both home nurses are very nice and the physical therapist gives me a tough work out. The physical therapist gave me permission to walk outside with cane to strengthen leg and walking. Wish I had more energy and felt better...but each day I feel a little bit better. You know me...NO PATIENCE [g].
My toughest problem now is low blood pressure. While I have always had low pressure (90/60); it has now dropped to 80/50. I guess this is why I have no energy. Susan, my home visiting nurse, has called my neurologist and family doctor, but they prefer that she contact Dr. Villaneuva for this issue as well as my issue with recurrent sleep disorder. She is visiting again today and will check on my blood pressure and then if it is still low, we will decide if it necessitates a call to Dr. Villaneuva. As Dr. Villaneuva is head of trauma and operates almost daily, it is very difficult to get a hold of him; but if necessary, we will call him for further instructions. My Mom said I had this trouble in the hospital after surgery; but now that I'm not on the pain meds that I was on in the hospital but on my own meds, my blood pressure should be back to my normal range.
I'm now home with my "kids" and eating regularly but small amounts of food (the great thing about being in the hospital is losing 2.5 pounds [BIG G] ). You know Dorothy's saying (from the Wizard of Oz)...There's no place like HOME!!!
Iwould like to thank everyone that sent prayers and cards; I truly appreciated it! Now that I'm on the road to recovery, you can send your prayers on to others. Thank you and love to All.
Update 19 Aug 2001
Iwent to Miami on Wednesday (8/15/01) and saw Dr. Villaneuva. What a surprise.....he shaved off his beard! He recognized me before I recognized him [g]. We were only 15 minutes late this time; all due to me. I thought we were to leave at 9am and luckily my Mom woke me up at 7:20 in time to shower, dress, feed the kids, and get out of the house. We left here at 8:15 and stopped at Mom's to feed her cats and started off to Miami at 8:30 a.m. Plenty of time to get to Miami by 10:45 if I didn't tell Mom to get off the wrong exit for the hospital. We got lost (again) but this time we found a policewoman who told us to follow her. She got us back on to I-75 to the next exit and right there was the hospital. How fortunate that we found this nice Miami policewoman or we might have been driving around Miami for hours [g]. We got to valet parking only 10 minutes late and got to the clinic only 15 minutes late when the good doc was just walking paperwork out to his latest patient (who was laying out on a stretcher) when he saw me and Mom and said "there you are". Of course, he knows we drive a long way across the alley and knew we would be there eventually [g]. He saw one more patient and I was his last patient for the morning.
He first asked me how I was doing. When I told him about the skull pains and soreness and the headaches, he told me that was all normal. He then described what he did in the surgery. He told me that he removed the bone flap and my eyes must of went up. Removed, I asked' Yup, he said. He told me there was scar tissue on my dura and leftover methyl mecrylate that he scraped off the bone flap. He put on the "duratin" to protect the dura from any future damage and left some overlap the bone flap like a gasket (his words, not mine). Then he attached three small titanium plates with three screws each in three separate areas around the bone flap to the skull to secure the flap to the skull. Before putting the bone cement, he made sure that the bone flap was really secure (I asked him if he did a tap dance on my head as that's what it felt like when I got out of surgery). Then he put the bone cement that would allow my bones to grow if they should decide to do that. Then sutured the skin over my skull.
When I asked him where the suture removal kit was (with a big pleading look on my face), he told me he would go and get it (can you tell I was anxious [g]'). He was very gentle removing the sutures and examined my skull very carefully. He answered all of my questions sitting next to me.
Questions answered by Dr. Villaneuva:
How many titanium plates' 3 small plates with 3 screws each.
What kind of activities will I not be able to
do; i.e. and for how long'
a. Driving: Local only; limited to 15
minutes.
b. Myofascial Release: Dr. V said that I could
start immediately if MJ avoids my skull but I wanted to talk to MJ,
my therapist before making any appointments. After speaking with
MJ, she told me that most doctors/surgeons do not realize the the
facia connects all of the internal organs, muscles, and nerves and
can pull apart sutures and affect the recovery process. MJ says
that I should wait 8-10 weeks before starting myofascial release
therapy; so I guess I will not be going until mid
October.
c. Vacuuming: Not yet.
d. Swimming: Not yet
e. Lifting: Limited to picking up Li Ming
only.
f. Washing Car: Not yet.
g. Gardening: Not yet.
h. Carrying: Not yet.
i. Bending: Not yet.
There are two bumps on left frontal lobe near hairline; what are they' This is one of the clips that he used to attach the bone flap to the skull. When I bend over, my head hurts. Normal.
Itold him about the night staff telling me to take my own pain meds, the comments made by the head nurse in the recovery room about how "us patients that had elective surgery knew there were no beds in the hospital and would have to just stay in recovery", "how I was told to open the window rather than getting another blanket", and my issues with his secretary not returning my calls and being nasty on the phone, and how they wanted to send me home the next day after surgery. He told me he would definitely find out which nurse told me to take my own meds, find out who the head nurse was in recovery that day and definitely speak with her, already heard about the resident telling me about how I was going to be discharged the next day and told him that I was to stay in the hospital for at least 4 days and put Marilyn in touch with CIGNA to resolve any issues with them. He also told me that he already had words with his secretary about other issues and would add mine to the list. Sounds like his secretary might be looking for another job especially when he mentioned she had no people skills, never mind the ability to work with brain injured patients which he works with every day.
He gave me two new scripts for PT and ST and another appointment for August 29th. He said he's almost sure this will eliminate my skull pain; but does not know yet if it will eliminate my headaches as that might be the residual of my AVM. Only time will tell. He was very proud of his work and wants to follow up with me very carefully.
Today I finally got to wash my hair (with Baby Shampoo as directed by Dr. V). What a great feeling! I also went shopping today for the first time. Geez am I exhausted. It took me two days to recuperate from the day trip to Miami and will probably take me three days to recuperate from today's shopping trip [g].
Update 26 Oct 2001
Hi there. Well, it's been two months since my last update and a lot has come about. I have seen Dr. Villanueva about every two weeks except for one appointment where he allowed me to go one month. I think the car knows it's way back and forth to the University of Miami Clinic on it's own [g].
Yes, my hair is growing and it almost covers my scar. Yippee!
Ifound out in early September that I am allergic to Vioxx. My body was covered with a rash that itched and itched. I went to my family doctor and then to my dermatologist who took a skin biopsy. The biopsy came back as an allergic reaction to medicine. As I have had allergic reactions to my anti-seizure meds, I stopped the Vioxx first hoping that it would be that and not my zonegran. Luckily, with the help of some wonderful cream salve which I covered my body with three times a day and stopping the Vioxx, the rash slowly and painfully went away. So I had to add another allergic to my Medic Alert and added it quickly [g].
My appointments with Dr. Villanueva have been exceptional. He always spends time with me (usually 45 minutes or more) and answers all of my questions. He checks on my scar on every visit and prods my skull very gently asking where it was tender. He told me that he was very happy with my scar. He said there is no fluid under the bone; the scar is healing well, and no water under the dura which is very good. He has added 300 mg of Neurotin which he wants me to take one a day (300mg) at night to try to control the pain and sensitivity and now 200 mg of Napersan each night. I am still taking zinc sulfate twice a day for healing of the skull and will continue until the prescription is finished.
Ihave been back to pet therapy for about 5 weeks with the exception of missing one week due to a sore throat and cold. When Ann and Jana are working with Li Ming and myself, Ann graciously drive both of us to the hospital so that I don't have to drive the 30 minutes each way. It helps immensely as I still don't have a lot of stamina and need to rest extensively after each hospital visit. But Li Ming and I both love being back at the hospital. I made Li Ming an Angel costume to wear to the hospital this Monday (10/29) as each year we dress up for the patients around Halloween; and they really enjoy it. Li Ming will have wings and even a halo this year. She looks just adorable in her costume.
He gave me a new Rx for outpatient PT as I can now drive once a day 100 miles. The new RX for PT states I should work on strengthening, stretching, and balance (with heat and ultrasound as needed) on my entire right side including shoulder, arm, leg, and hip. I can also work with weights but no more than 10 pounds. After working with John, my muscles are getting stronger in my arms and legs which has helped my balance. John has even gotten me up on my roller blades on three occasions (with a gait belt) for about 5-10 minutes. I'm not allowed to roller blade on my own, but Dr. V said it's ok if we work on roller blading in PT. It makes my brain have to think about balance and mobility and watch where I'm going. I get tired after about 5-10 minutes and have to quit. But it's fun J. He also gave me an separate Rx for therapy especially for head and neck pain.
Upon my last visit to Dr. V just this past Wednesday, he thought I there was a good possibility that I have occipital neuralgia. After his examination, I was in such pain in my neck and had such a terrible headache; that I rescheduled my Thursday PT to 1:30pm. I was in such pain that John, my physical therapist, used hot packs, gentle massage, and ultrasound to eliminate the pain. I cancelled today's PT because I am in pain again. just emailed Dr. V and told him that about the reaction to his exam and he said that confirms that I have occipital neuralgia and he will give me a block on my next appointment which is November 28th. If I am not able to wait until that appointment, he will take me sooner. I can also up the Napersan to twice a day. I emailed him back informing him that I will probably need authorization from CIGNA before he can do the pain block. I also told him that I am always tired and exhausted. Dr. V told me that I have been through three very serious operations and a stroke in less than 35 months and that my body is still recovering. He told me that I will not start feeling "good" for about six months. Sometimes I'm so tired that I just start crying and don't know why. Hopefully this will go away with time and rest.
Has anyone in our family ever been diagnosed with occipital neuralgia or had a pain block for something similar' If so, I would appreciate information on this new diagnosis.
Hugs and special thanks to my favorite survivor pen pals for getting me through this latest recovery. Without you guys, it would have been so much more difficult.
Update 26 Jan 2002
Update January 24, 2002
Hi. I hope this update finds all of you doing well. I have met so many friends on this site and continue to meet many more. We are so lucky to have such a compassionate group of family members that is forever expanding; unfortunately, it's sad that the continued growth is due from AVM's and aneurysms. Luckily for us, this site is here.
Iam still under Dr. Villanueva's care and see him about every 4-5 weeks and still attend PT three times a week. I am getting physically stronger and my balance is better thanks to my physical therapist, John, and his PT tech, Christye. They both work me hard. John comes up with lots of new exercises to challenge my balance; we have lots of fun so the time goes quickly. I lost about 15 pounds and have more muscle tone than ever. The best of all is that I haven't fallen - I still walk into people and walls from my peripheral vision loss; but I don't fall. John feels that I might be able to be released from physical therapy soon but maintains that I will definitely have to work out at a gym at least 3x a week. My heart rate has now dropped from 60 to a new low of 46. Guess I'll have to watch that I chew my pretzels before swallowing.
I started feeling down during the month of October without realizing it. What was especially painful to me was the loss of two friendships that I had for the past five years. I'm sure that these old friends don't understand what it is like to live with the kind of silent disability that we all have had to adapt to; but it hurt just the same. One of them told me my illness "consumes" me, and I cried for days. Having lost some friends after I underwent my brain surgery, I thought I would never have to go through that hurt again; but as they say "life goes on and you pick up and go forward". Of course, it's taken me a few months to understand that people have different priorities in life and to let go; but it breaks my heart just the same.
In early December, my pain specialist gave me a cervical block in the OR fully aware that the oxygen tank was empty and knowing that I have a seizure disorder and an ordinary low heart rate. After attempting to discuss this with him a few days later, he lectured me rather than allowing me to discuss this with him. I also learned that he never forwarded any of his surgical files to Dr. Villaneuva even though he said he did. I decided that I needed to find another pain management specialist. My new specialist is a very caring doctor who does all nerve blocks in an OR environment as he feels all blocks can cause a seizure. He is a very cautious and caring professional who is in the active reserves after 911; I feel much more comfortable with him.
Christmas is never one of my favorite holidays and this year was probably one of the most difficult. This year I realized that I just can't do what I used to do. Between shopping, wrapping, and shipping gifts; designing, printing and sending Christmas cards; cleaning and decorating interior and exterior of the house, and lastly baking bread and cheesecakes - I'm so tired that I can't enjoy the holidays. This is something I'm going to have to work on for next year.
Ifinally realized my "down in the dumps" was really depression and getting worse. I kept trying to tell myself that there was no reason in the world that I should feel this way - I was here and alive; there are many other people in far worse situations than I. I kept thinking about those victims of '911' and thinking how those survivors' life would never be same. I finally called my neurologist in late December. It appears that the Paxil just wasn't working for me after 3.5 years. He tried putting me on Celexa but after about two weeks of taking ½ dosage; I had severe side effects of upset stomach, nausea and a severe migraine of 5 days. My neurologist has now given me a one-month sample of Zoloft to see if that will help. It wasn't until this past episode of depression that made me realize how much our body controls our emotions - no matter how we rationalize the situation. When my neurologist told me three years ago that I would be on anti-depressants for life due to my brain surgery, I didn't realize how true that was.
Li Ming and I started back in obedience training again on Wednesday evenings. I didn't realize how much we both missed it. Our first night back we were happily welcomed back by many of our old training buddies. We go 30 minutes early before obedience class so that Li Ming can go through the agility equipment that she learned before we stopped going. The first week, Li Ming learned how to do jumps and the doggy walk the second week. During obedience class, Li Ming has adjusted like she never missed a class. I will continue to take her to class as this is great bonding between her and I - even if I have to take a pain pill to get through the class. Maybe one day, we will be able to enter obedience competition.
Iam researching how to get Li Ming (who is already certified as a Therapy Dog) registered at a Service Dog so that I can take her with me to places that would otherwise not allow a certified Therapy Dog. There was an article written in a local paper about a woman who has a seizure disorder and neuralgias and had her dog registered as a Service Dog. Researchers and doctors have acknowledge that having a dog companion with patients has helped reduce their depression and pain. If anyone has any information that can assist me and others in our group about getting our own dog certified as a Service Dog, please let me know.
Iam trying to get permission from the authors of those articles on AVM's from Neurology Updates to post them on my AVM/Aneurysm Web Site. So far I've received permission from one author. As many do not have email addresses, I have to snail mail some of the requests for permission. I want to dot my "i's" and cross my "t's" before putting any of these important articles on the site so that there are no repercussions later on. As I get permissions on each article, I will add them to my site.
Iwant to make special thanks to Nonia, SuzeQ, Susan, Madeleine, Judie, Anne, and all of my other friends that I can't remember at this moment for helping me through the past months. Their friendship, caring, and compassion has made me realize that I can be my toughest competitor and their best friend - all at the same time.
Lastly, I am happy that my new friend, Marylee Arnold, had her AVM successfully removed with no vision loss on 1/23/02. Way to go girl!
Update: 1 Oct 2002
Iknow that I haven't been online much lately and wanted to tell you what I was doing. I apologize for this "general message"; but after you read the update, you will hopefully understand why I haven't written to each of you individually.
For the past 6 weeks or so, I have not been feeling great and have been seeing several doctors. My neurosurgeon feels that I have an autoimmune disorder. After seeing two doctors that believed my exhaustion was due to my medications rather than an illness and refused to do any testing. Well, I have finally found a North Naples doctor (originally from NJ) who is a allergist/immune disorder specialist who was willing to review my symptoms and do considerable blood work. He has also put me on antibiotics and prednisone; but this has not helped me feel any better so far. Unfortunately, the test results are not due back until, Thursday, 10/10, when I have an appointment with him as they take two full weeks.
It has been very distressing for me to feel so exhausted, have no energy levels to the point that taking a shower is a major ordeal for me, never mind trying to get to the store to do any food shopping done. I have major pressure in my skull causing major headaches, joint pains, leg pains, and other symptoms.
To add more stress, my Mom has scheduled back surgery on the other coast of Florida on Wednesday, 10/9. When I calmly spoke with her two days ago to explain I was not feeling well and that my new doc told me it takes two weeks for my blood test results to come back and asked if she wouldn't feel better if she could postpone her surgery for at least one week so that I could go with her, she told me that she would call the surgeon but that would cause her much anxiety. Today she called me and told me that they finally called her back and her surgery is still scheduled for 10/9 and that there were just too many schedules to adjust for her surgery to change it; why couldn't I change my doctors appointment and rush the blood work. Well, as we all know, there is no way that I can rush any blood work that takes two weeks (especially immune and autoimmune testing).
To make matters worse, she feels that I'm not really sick and just acting sick just to cause her grief and told me that I'm this way just to make her life difficult. Well, when it takes you 30 minutes to get out bed and walking the dog makes you want to go back to bed; you can't imagine how frustrating it is not to want to feel good. I didn't make Pet Therapy last Monday and know that it's unwise for me to go until I find out what's wrong with me. And those of you who know me, know I never miss Pet Therapy even with horrible headaches as that's my one love.
Hopefully, my Mom will find a friend that will be able to go with her to comfort her during her surgery, and I will be able to find out what is wrong with me. I hate feeling like this.....it's like having pneumonia, hepatitis, and mono.
Ijust wanted you to know that I'm hanging in there and have finally found a doctor here who is taking me seriously and has the expertise and knowledge to find answers. Dr. Rosenbach has a degree in microbiology and immunology as well as research background in bacterial, fungal pathology, and parasitology. He has also worked with NIH, is an internist, a specialist of allergy and immunology and a researcher.
Update: 24 Feb 2003
Well, it's been several months since my last update and a lot has gone on in my life. My Mom had back surgery and has been in and out of hospitals and rehab facilities in the past 3.5 months (two ambulance pickups when she fell at home) which was quite stressful. I handled her laundry for two months and her bills and checking accounts for the entire time. Unfortunately, I had two seizures in December in the early morning hours and suffered another bout of chronic fatigue syndrome. Thankfully, Mom is now on the road to recovery and has a live-in until the beginning of May which has helped take a lot of stress off me.
Ihad surgery on February 13 to remove a suspicious mass from my left breast and had to wait an entire week before I got the results of the biopsy. It was a VERY LONG week for me; but I kept busy physically and mentally. After resting the Friday after surgery, on Saturday morning I had testing for Therapy Dogs, Inc. I rested on Sunday; on Monday Li Ming and I went on our hospital visits. I kept busy working on minor interior decorating projects during the week until it was time to return to see Dr. Beshai on Thursday afternoon. I got the best news on Thursday afternoon that my mass was benign but that we would have to keep a careful eye getting mammograms and visiting the surgeon every six months.
After leaving her office with a terrible headache (I fall apart after the stress :) and going across the street to pick up a few items, I realized that I forgot to ask her about a growth on my left arm. So back I went hanging my head in embarrassment and asked the nurse if I could see the doc again. After waiting about 15 minutes, I got to see Dr. Beshai again and showed her the growing lump on my left arm. My arm has been hurting when I move it in certain positions for over a month but I was so worried about the mass, I just forgot to mention it (duh). The surgeon told me that it was probably a fatty tumor that has gotten attached to a part of my muscle or nerve, and I should see her again in one month to see how much it has grown and to try to forget about it.
Ialso saw my immune doctor this month after getting treatments for the past four months. My last lab test showed that my blood test is still low. He has upped the amount of gammaglobin that I will receive each month to a higher number, and we will review a new blood test again in four months. My energy level is been better two weeks after the treatments but then falls the following two weeks which also tells him that the immune treatments are working but are not quite high enough. He also told me that I will have to receive these treatments for the rest of my life - oh well!
Ialso had a skull x-ray which I brought over to Dr. V in Miami (my neurosurgeon). It appears that the bone from my flap has not connected to my skull, but he can not tell if there is any bone absorption from this one x-ray. So I will have another x-ray six months from the last which Dr. V will compare to the earlier one to see if there is any bone absorption. I told him about the one seizure and he gave me a script for an EEG in the event that I had another seizure; but I haven't had the test done because both seizures happened at about 5:30 a.m. and I feel that they were caused by excess stress. Luckily, I have not had another seizure where I lost consciousness since. I'm scheduled to go back to Miami to see Dr. V on Thursday, February 27th. During the past few weeks, he has emailed me to ask how I am doing and about the results of my biopsy of my mass - how many neurosurgeons would do that'''
My life and health is now back on track and hopefully will remain so for the remainder of the year. I want to thank my friends that have helped me through the past four months for all of their help, understanding, and prayers... I couldn't have made it through without it. Many hugs and love to you all! God Bless!
Update: 3 Mar 2003
I was 2/3rd of the way to Miami on Thursday when I received a call on my cell phone from Betty telling me that when she brought my file over to the clinic; she was told that Dr. V was called into emergency surgery and had to cancel all of his appointments for the day. As it takes me over 2½ hours to get to Miami and I had planned to stay over night with my girlfriend in Boca (about 40 minutes north of Miami), I decided to call her and tell her I would be arriving earlier than I planned. Unfortunately, I am scheduled to go back to Miami on Thursday, March 13th.
Ialso forgot to mention in my update of February 23rd that I have elevated the head of my bed approximately 5" which has helped reduce my headache pain. While I still get headaches, they are fewer or less severe. For any of those in our family with this type of vascular issue, be aware that you should raise the frame of your bed - not the mattress as you will damage the mattress. Also, it may take a week or more before you see some relief.
Update: 27 Apr 2003
In the last month, I have seen my neurologist, my ENT specialist on two occasions, my neurosurgeon in Miami twice, and had a CT scan with and without contrast on the growth on my left arm. To say the least, these appointments have kept me busy and have some new updates to report.
My sixth month check-up with my neurologist went well. He was in total agreement with the neurosurgeon not to increase my anti-seizure meds after having two seizures. He agreed that stress, exhaustion, and the diagnosis of my immune disorder were more than enough to cause the seizures. I also happily signed a request for "authorization" to my immunologist to forward a copy of my files so that my neurologist could learn more about my disorder. I will also forward more information to him on the disorder.
Isaw my ENT doc on two occasions to try to find alternative methods to help eliminate these ear infections rather than constantly taking antibiotics. On the first visit, he gave me samples of Clarinex. Thank goodness I didn't get the prescription (it costs approximately $79 for 30 pills). It turns out that after taking this med for approximately 10 days, I got a rash and found another med that I am allergic to :[g]. On the second visit, he gave me samples of Allegra and Zyrtec to try and told me to let him know which one works best. He also told me that I have the worst case of TMJ that he has ever seen and that is something that causes ear pain as well. He wants me to see a specialist; something that Dr. V (my neurosurgeon in Miami) has been trying to get me to see for several months now.
Ihad my 5th & 6th treatments for my immune disorder on the increased dosage. I don't feel any difference from the lower treatment; but I guess that I will have to wait and see. My next blood tests will be prior to my 8th treatment and then I will go back to my immune doc to see the results. He will then compare the blood tests with how I feel and increase the treatments accordingly.
Idid see Dr. V (my neurosurgeon in Miami) on two occasions. I showed him the lump on my left arm, and he was happy that I waited before having a local surgeon operate on it. He requested that I get a CT scan with and without contrast to determine if it was a lipoma or a neuroma done locally and return when it was completed with the films and report. Luckily I brought the films with me two weeks later as the local radiologist misinterpreted the films and reported that there was no lipoma or neuroma [g]. When Dr. V viewed the scans, he found the mass right away. He has now requested that I get an ultrasound on the area as he has determined that I have either a neuroma or a neuro fibroma. I am to return to Miami when I get copies of the scans and report. I have an appointment to get my ultrasound on Monday, April 28th, which will determine if the mass is attached to the outside of a nerve or is contained inside a nerve. That will determine our next step.
Ihave also been having pain in my right ankle, right hip, and sometimes my right wrist, thumb, and shoulder. Both Dr. V and my neurologist feel that this is Charcot's Joints. They feel that this came about because I was paralyzed from the stroke and had to go through physical therapy on three separate occasions (once for the stroke and twice from subsequent skull surgeries). Due to this, my right side has been my weak side. As both doctors explained, when one side has been affected in this way; the joints don't function as designed causing friction and pain. Any way, Dr. V has given me samples of an anti-inflammatory. I also spoke to him about "Bromelain" which is a homeopathic made from pineapple extract. He suggested that I try either one of these on one day and take a few days off just to be sure that I don't have a reaction. Both doctors say that I should keep active as well; which I try to do as much as possible.
Dr. V is also trying to find an Oral/Mascular Facial Jaw Joint Disorder Specialist who will take Medicare as he feels that most of my TMJ is from the intubations, and the one specialist he recommended says that Medicare will not accept his practice.
On the positive side, Li Ming is graduating from beginning agility on Wednesday, April 30th and is going to be registered in intermediate agility in the near future. She has so much fun in agility and it keeps me in shape as well. On May 1st I will be another year older, and no comments from the "peanut gallery" thank you! It's just grand to make it to another year [g]!
Ikeep going forward. I thank my lucky stars that I have wonderful doctors who care about me, loving friends who keep me going forward, and devoted four-legged kids who definitely keep me on my toes: [g].
Update: 7 May 2003
Iam so terribly sad to inform you that my precious Seti, my flame point Himalayan, passed away suddenly last night (May 4).
As most of you are aware, I adopted Seti at a shelter at a cat show when his previous owner moved away and left Seti outdoors on his own. Someone in his old neighborhood after feeding him for two weeks brought him into the shelter the night before the cat show, and I was lucky enough to find him. I adopted Seti on May 9, 1996, and the vet felt he was either 3 or 5 years old. When I brought him home with me, he walked around my condo once and curled up as if to say, "ahhh, I've found a good home" [g].
Up to Saturday night, Seti was still sleeping curled up and touching me while Li Ming was sleeping on the pillow next to me. I couldn't get him to eat on Saturday and he started having trouble breathing. On Sunday when Seti wouldn't eat tuna or his hairball medicine or drink any water, I took him up to the emergency vet. While filling out the paperwork, Seti died suddenly in my arms. I screamed out for help (as no one was at the front desk at the time) and the vet tried to resuscitate him.
When vet came out alone, I knew that Seti didn't make it. He told me that Seti either had a carcinoma or died of congestive heart failure; he tried everything to save him. I did ask if I could take Seti's body home with me as I was going to bury him but while driving home, I called Anne and asked her how to go about it. She recommended that I have Seti cremated and called her friend, Penny, who met me at San Carlos Animal Hospital at 9pm.
Even as I type this message, I'm crying. Li Ming wouldn't eat her breakfast this morning and I had to convince her to eat her dinner this evening. Even while we worked at the hospital, she wasn't her happy self as Li Ming loved Seti as much as I did.
He loved getting his lion cuts, loved to play, and loved sleeping curled up touching me at night. While I know Seti had a good life with me and the other kids, I will miss him very much.
Iknow he's brought lots of love to me, Sheba, Tut, and especially Li Ming and hopefully he's watching over all of us in heaven.
Thank you for sharing the last seven years of your precious life with me. I love you and miss you dearly.
Seti, may you rest in
peace.
May 9, 1996 - May 4, 2003
Update: 17 Sep 2003
I'm off to Miami tomorrow to have a doppler ultrasound of my occipital arteries at Jackson Memorial/University of Miami. Then on Thursday, I will get to see my favorite doctor and surgeon, Dr. Villaneuva and hopefully we will have the results of this test.
Unfortunately, there's no MRI center or hospital that can do this complicated test nor do I wish to be one of their first test cases. Hence, I will go where they do these tests on an ongoing basis.
Keep your fingers crossed and say a few prayers for me. Dr. V hopes this test will show once and for all if one of these arteries are blocked or not formed correctly which would account for the violent headaches that I'm constantly getting.
Thanks much and I will update everyone when I return (probably over the weekend).
Lots of hugs
Update: 31 Oct 2003
I have been regularly going for my IVG infusion treatments each month for my immune disorder and my recent blood tests show that my levels are going up. Right now my blood levels show that I'm in the low range of normal but my immunologist has again raised my dosage to 30 grams a visit as I am still tired by the third week. Once I feel "normal" for an entire month, he will stabilize the dosage. I will have to be on these treatments for the rest of my life; but Li Ming, a good video, and lunch makes the 5-6 hour treatment time go by pretty quickly.
Dr. V requested that I get a CTA due to the quantity and severity of my headaches on the right side of my head which meds were not relieving. Two days after this CTA (9/27), I had a grand mal seizure while sleeping, fell out of bed, banged my head on the nightstand, and was unconscious for an unknown amount of time. When I awoke, I was vomiting continuously and had the chills. I finally called a neighbor for help at about 6pm. Carol came over and walked Li Ming, fed my "kids" and went to the store to buy some ginger ale and chicken soup. Carol made the soup and stayed with me for a few hours. I finally kept some ginger ale and chicken soup down. I called my neurologist and Dr. V the next day and told them what happened and spent most of the week recovering. They both feel that this seizure was brought on by stress and extreme fatigue; but have increased my seizure meds just in case. It was probably the second worst seizure I had, and it really took a lot out of me. I want to thank Kim, Susan, and Rachel for their phone calls - they just don't realize how much they meant to me. Dr. V faxed a script over for a CT to me and another neighbor, Brenda, drove me to the hospital to get that done on Friday (the first day I was out of the house).
I finally got to Miami (I was scheduled to go the Wednesday 10/1) to see Dr. V. I had to send the CT and CTA scans to Miami from my local hospital as he likes to read these films himself. During my visit with him, he went through the entire set of films for me. Here are the results:
He said he would talk to the all of the doctors in the next few days and have another secretary, Marilyn handle all of the arrangements. He also gave me samples of Neurontin and Topomax as both "drug fairies" were there recently. I told him that I had run out of Neurontin, and he said that I should never run out of that. He also gave me a letter to Lee County Tax Department stating that I am totally and permanently disabled so that I can get a discount on my property taxes. After doing some research, I will need to get a letter from my neurologist as well as the County requires two letters of permanent disability before giving you this special exemption. I think it will save me approximately $300-500/year. I see my neurologist today and will ask for this second letter.
As a final note, Li Ming didn't want to leave my bed to go out even though she hadn't been out in over 12-14 hours. I had to convince her it was ok to go with Carol and off she went. When both of them came back into the house, Li Ming came charging into the bedroom and wanted to come back into bed with me. For the next five days, Li Ming never left my side. As a matter of fact, she slept on my left side, which is the side that I fell out of bed. For Halloween, I made Li Ming a witch's costume which she wore to Pet Therapy at the hospital. The patients and staff laughed so much - she was just adorable.
I want to thank everyone for their support in this past month. While I have always tried to be the strong and supportive member of this family, this last seizure had me really down. It's times like these when you realize how much our family and their support really mean. There is no way to express my gratitude for my friends and their caring love.
Update: 17 Jan 2004
Hi everybody. Happy New Year! I have several pieces of good news this time. As many of you are aware, I have been training with Li Ming in agility for about the past 10 months or so. This is a team sport that keeps my body more mobile and flexible, makes my mind try to overcome my memory issues, and creates a stronger bond with my seizure alert companion. We train with Mindy from Orlando who comes to Fort Myers and have made leaps and bounds in our training. Li Ming and I made first leap when we entered our first agility trial in Miami the first Saturday in December. While I was nervous and very anxious going to my first agility trial in Miami by myself, I made myself do it.
While staying at my Dad?s over the Christmas holidays, we entered our second trial the last weekend in December and not only qualified in Jumpers & Weaves and Standard Agility but won First Place in both events on Saturday. What a proud day for both of us! Once again I also met some wonderful people; one a lady named Cindy who had a brain tumor and had her surgery in Miami and another named Linda Sue who has fibromyalgia. We have communicated over the Internet since and have made arrangements to meet at upcoming trials. I am working with Mind
While staying at my Dad's over the Christmas holidays, we entered our second trial the last weekend in December and not only qualified in Jumpers & Weaves and Standard Agility but won First Place in both on Saturday. What a proud day for both of us! Once again I also met some wonderful people; one a lady named Cindy who had a brain tumor and had her surgery in Miami and another named Linda Sue who has fibromyalgia. We have communicated over the Internet since and have made arrangements to meet at upcoming trials. I am working with Mindy and my neuro psychologist to learn some tricks on how to cope with my peripheral vision loss and short-term memory issues and not get lost in the courses [g].
The second good news is that I finally am being admitted to Jackson Memorial Hospital in Miami on Monday, January 26th, for approximately 3-4 days for the following procedures:
While Dr. V said that the neuro surgery ward didn't want me to bring Li Ming, who is my service dog, to stay with me. Therefore, he has made arrangements for me to stay on the 7th floor where his Mom stayed when she was ill and the nurses love animals and are looking forward to having Li Ming and I stay.
My brother told me this was my 60,000-mile tune-up; I corrected him and said this was my 50,000-mile tune-up as I'm only 51 [g]. My neurosurgeon advises me that I will be fully functional with the exception of a small bandage on my arm to attend an agility trial in Vero Beach on February 7-8th.
While I will never be the person that I was, I have found that there are always new doors opening and new people to meet through those new doors. Sometimes you just have to close your eyes and take that leap of faith.
My thoughts and prayers are with each and everyone in this wonderful family.
Update: 03 Feb 2004
Hi everybody. Well, I've been back from Jackson Memorial Hospital since late Friday evening, 1/30. There were too many issues to go into (I've given the abridged version below), but I'm thankful to be home and recovering.
My cranio repair on Tuesday, 1/27, with Dr. V went great. It turns out that my body was rejecting the titanium plate in my left frontal lobe. Two of the four screws were loose (yes, you can now say that I had a few screws loose). Dr. V had to remove both screws, drill the plate down so that it was flat, and place some material over the plate to avoid my body from rejection again. Dr. V closed my curved 3.5" incision with internal stitches with some new skin glue so that I won't have any external stitches to contend with. While in surgery, the surgeon for hand/arm specialist checked in and looked at my CT and ultrasound and palpitated my neuroma on my arm. They felt that it wasn't a tumor and want me to wait for surgery until they can evaluate me later on when I return to see Dr. V on one of my visits.
Having faxed a copy of my Immunologist's RX to Dr. V's office several times and giving the original of the RX when I went into the hospital, I had my surgery for my port implant for my infusion treatments by Special Surgery on Wednesday. When the surgeon asked me to sign a blank consent form, I refused and sent him off to complete the form. The OR nurse told me I did the right thing. When he came back with the completed consent form before signing it, I added dual port to the form and signed it. When the procedure was over with, the OR nurse was telling me how to care for the "port" and that I was not to get it wet. At this point, I was still not able to see what it looked like as I was still draped. When I questioned her for how long, she told me forever. I was very upset and told her that I was informed that the PORT I was to have implanted was an internal dual port which I could shower and swim with as I have an immune disorder which requires infusion treatments for the rest of my life. So then I get hysterical because it is now apparent that this surgeon installed a central IV line which was not what was called for and should have doubled checked the orders as well as the original script that was in front of my chart. When I put DUAL port on the consent form that should have been another "red flag". But rather than stop the surgery and call Dr. V or my Immunologist, he proceeded and put in a central IV line which has to be changed every six months. By time I got up to my room, I was still crying but much calmer than I was. The nurses had already spoken to Dr. V's PA and already paged Dr. V.
Dr. V came up that afternoon after surgery and read the RX and told me, my Dad and Joan that the script was very clear. When I informed Dr. V that this surgeon wanted me to sign a blank consent form and I refused and that I put down dual port on the completed form before I signed it; he just shook his head. Arrangements had already been made for me to go back into surgery on Thursday (my third day of no breakfast) to get the central IV line removed and the Dual Port installed as an emergency. Dr. V completed the consent form, signed it, and I signed it so that there would be no misunderstanding. Unfortunately, as Special Surgery was "squeezing me" into their schedule on Thursday, there was no set time for my surgery.
During this time, the IV in my right arm was getting ready to blow and was really sore so I had to have the nurses take it out. I knew this meant I would have to get another IV, which my veins would be ill equipped to handle, but the nurses were already putting warm compresses on my vein that had blown.
On Thursday at 11am, I was taking down to Special Surgery. When brought into the waiting area, this surgeon must have told the staff that I changed my mind because that's what they were telling everyone. I had to just correct everyone that told me I heard you change your mind and tell them that the wrong port was installed.
Before my second surgery, the same surgeon asked me if I would sign another consent form. I told him that Dr. V had already prepared and signed a consent form and that it was in my file. When he reviewed the consent form, he told me that since this form wasn't "witnessed", he needed me to sign another form that he handed to me. When I questioned if this said the same thing as Dr. V's consent form, he asked if I wanted to see Dr. V's form. He showed me both forms, I signed his after he signed his (even though his wasn't witnessed) and asked that both be put into my file. Now you have to remember this was the same surgeon who wanted me to sign a blank consent form the day before and now he's concerned about a consent form signed by the Head of Neuro Trauma. I was in surgery for almost two hours and very sore but came out with the BardPort, what I was suppose to have initially.
I did meet through Dr. V another wonderful doctor, Dr. Zhou, who is the Director of Pain Management and Assistant Professor. He gave me a pain block on Thursday morning before my surgery in my room for my occipital neuralgia and came back that evening to see how I was feeling. He used to work at Harvard Medical Center, and he's going to coordinate his schedule so that I can see him when I see Dr. V. We spent a lot of time discussing headaches and what most doctors call "migraines" after a brain injury because they act like migraines but he feels really aren't. I will keep you updated on how my treatments with Dr. Zhou work out; but I was so impressed with him, I already gave his phone number to two of my friends who suffer from daily severe headaches and back pain.
I'm glad to be home recovering. Li Ming is also happy to be home. Of course, she had more visitors than I. Everyone complimented on how well behaved and how beautiful she is. I have a home health nurse who comes every morning to check my skull and change my port dressing and tells me that I am healing ahead of schedule. If only my chest weren't so tender [g]; I guess that's the price you pay for two surgeries in the same incision in two days.
Special thanks to Cindy, my agility friend, who kept me laughing each night with phone calls and to my Dad and Joan who spent the entire time at the hospital with me worrying and buying ice cream and goodies when I was starving and could finally eat. Many thanks to all of my good friends for their special caring thoughts and prayers to help me through this hospital stay.
Update: 24 October 2004
Hi. It seems like ages since I've updated everyone. I've been back and forth to Miami several times and had x-rays and CT scans, and been in physical therapy for months.
I've been living with a bad ankle that just doesn't want to heal and a great amount of back and neck pain due to severe spasms. I went to see Dr. V last week with my latest CT cervical and spinal films. What a surprise we both had. It appears that I have a healed skull fracture at the base of my skull in the occipital area, which could account for the pain that I've had for months and months. Dr. V wants me to consider seeing a neurosurgeon/neurovascular specialist at Jackson to discuss the option of having an arteriogram done. He mentioned that it's been over 6 years since my last arteriogram and since I am not able to have an MRI, maybe it's time to see if everything it still ok inside my brain. With all of these little symptoms going on with my right side, he felt that while it is probably the after effects of my AVM bleed and stroke; but still feels it's something that we should consider researching.
My left vision was changing dramatically from one minute to the next. After reading some of the "less common" side effects on Motrin and Aleve, I spoke with Dr. V. While he said he never heard of anyone having this problem, he told me to stop taking it for 3-4 weeks and see what happens. Luckily, my left vision stabilized. Two more meds that are now on my list of "do not takes" [g].
On a happy note, I brought home Li Ming's half sister (Tian Ya Yi Min or Tia) on July 4th. Tian Ya Yi Min means 'happy and fast until the end of Heaven'. She's now 5 months old and such a delight. I've been training her for conformation as well as agility. She is a very happy puppy who wags her tail constantly, has springs under her paws for great jumping ability, and loves everyone.
Li Ming took two First Places and a Second Place in agility in Orlando in September this year for both of her Open Agility titles. She was awesome. So we are now in Excellent Agility. Li Ming has gotten her Novice and Open Titles in just six months; what a great agility dog she's become! We still go to the hospital to visit patients every Monday, which she loves.
Li Ming and Tia have become fast friends playing together. We all travel to the agility trials together. I even traded in my Camry Coupe with 89,000 miles for a 2002 Honda SUV so that I would have more room for agility trial equipment and luggage and my kids [g].
Now if I could stop bumping into things, falling over, and live without some of the pain, and get SSDI to get their act together; life would be good [g]. Hugs to all.
Update: 23 December 2004
Happy Holidays to all! It seems ages since I've updated my story; but I guess it's only been two months. First of all, I would like to apologize to all of my friends who think I have drifted off this side of the earth - trust me; I'm still here; just hibernating some. This year has been tougher than previous years for me.
I have been asking my neurologist to change my anti-depressants for the past six months or so and thus far he hasn't done anything. When I last saw him two weeks ago about a lump on the back of my skull where my skull fracture was; he didn't seemed concerned nor knew what it was. He told me that this mass was the size of an M&M. "M&M?" I asked. Then he said "well, maybe a peanut M&M". My girlfriend who is a neuro nurse measured it that previous weekend and told me it was about 1" in circumference. It was painful to sleep on and getting bigger. My doc said he could give me pain meds - gee, what a guy. Strike 1!
When I told him that my anti-depressants weren't working any longer (like the previous ones after being on them for a period of three years or so), he told me that he didn't know what to give me. Excuse me? I've only been on Paxil and Zoloft and there has got to be a zillion anti-depressants on the market. When I gave him two recommendations from my immunologist, he vetoed against them saying they could cause more seizures. OK, so let's try Paxil CR. Nope. He wouldn't try it. Strike 2!
I dropped of a copy of an article on Vitamin E to my neurologist (with my name on it) as I take 400 IU's every day for my vision and knows that he takes 1,000 IU's for his heart because his father died at a very young age of heart failure. When I asked him if I should continue taking the Vitamin E, he said to me "Oh yes, one of my patients told me about that and I did some research on the internet and I've stopped taking all of my Vitamin E". He never called me back to tell me to stop taking my Vitamin E. Strike 3!
When I saw my neuropsych doc this past week, I told him that neither my neurologist nor him have taken me seriously for the past six months. I explained that my life was totally out of control, I was losing things left and right, I got lost in Miami for two hours when I was 6 miles away from Jackson Memorial Hospital, etc., etc. I told him that I was tired of being run down and didn't want to spend another day with the blahs. I also told him that if my neurosurgeon told me that my brain wasn't making seritonin, why didn't any of my two other neuro docs believe it? I think my neuropsych doc finally realized that I was at my wits end. He made a phone call to another neurologist and got me an appointment on January 19th and had me put on a "cancellation" list for an earlier appointment. It's a shame that I had to get to this point to finally get help from my doctors. It's also a shame that it will take about a month after my next appointment to see results from any change in meds.
I did get to see the neurosurgeon/neurovascular specialist in Miami. As I was over two hours late for my appointment, he was very nice to wait for me. Dr. Zauner also agreed with Dr. V that I needed to have an angiogram. He mentioned that it is standard to have an angiogram two years post AVM resection and since it's been over six years, I was well overdue. We discussed the stroke percentages as he reviewed all of my films and he said that with the newer angiogram techniques, stroke rates have dropped to 0.5%. With my history it would only go up to 1%. They currently stitch the incision area, but again, with my immune disorder; he would recommend that they give me antibiotics during the procedure and have me lay down for six hours with pressure on the vein to avoid any complications. His office and Dr. V's office are going to coordinate their surgery schedules so I can get the angiogram and Dr. V can remove the neurofibroma on my left arm removed at the same time in January 2005.
Hopefully after these procedures at Jackson Memorial in Miami and a new neurologist in January, my health will start to improve and I will feel more like my 'ole' self.
Wishing everyone a wonderful Holiday Season. Special hugs, Candy, Li Ming, Tia, Tut, and Sheba.
Update: 12 February 2005
I went to see my favorite doc in Miami this past Wednesday. It was a long trip back and forth to Miami. I sure wish these snowbirds would learn to drive. Whenever "season" and our northern visitors come south, the accident rate increases 10 fold. I passed two accidents on the way there and two more on the way home. Because of the bumper to bumper traffic, it was six long hours of driving and over 1.5 tanks of gas. One accident included a totalled cop car hit broadside by a truck; I sure would hate to be that truck driver.
Dr. V has finally gotten together with the neurosurgeon and neuro radiologist who is doing my cerebral angiogram, Dr. Zauner. They are looking at admitting me to Jackson Memorial Hospital in Miami either Sunday 2/13 or Sunday 2/27 for about 4-5 days. Dr. Zauner (who Dr. V says is the best) will do a cerebral angiogram on Monday and embolization if necessary as that is the most important. Dr. V will do the surgery on my neuroma and the ostroma for the bone lump from my fractured skull where a hemotoma developed and then bone kept growing over it on the back of my head on Tuesday. Then Wednesday I will have an EEG. On Thursday I will have a spectrogram. With both of these tests, Dr. V hopes to find out the reason why I am having so many problems with cognitive and memory issues. Dr. V has already told the hospital to expect Li Ming to be with me on this visit.
When we discussed my sleep disorder which has cropped up again, Dr. V felt that relieving some of the pain issues from the neuroma and the lump on the back of my head may help. Also he mentioned that removing the neuroma from my left arm would also help the bursitus in my right arm which has occured from overuse of my right arm.
He also feels that I might have fibromyalgia if nothing shows up on my cerebral angiogram that would explain the headaches, exhaustion, and joint pain. Dr. V also told me I will need about two-three weeks to recouperate - so I will have to schedule my trials for the recovery.
Hopefully these procedures will be the end of a never ending recovery process of six years - I can always hope; can't I.
Thankfully, my neighbor will take care of my feline kids. My friend, Cathy, will take Tia into her home with her four furbabies. She warned me that Tia may be herding at the end of her stay as Tia and Summit (her Aussie) love to play together and Summit loves to herd. Cathy will also bring Tia to her agility class on Monday night as we both train our dogs in agility. Li Ming will be with me in the hospital taking care of her Mom [g].
Love and hugs to all.
Update: 6 March 2005
Hi. I got home from the hospital last night at about 6pm. Gee Whiz but it's great to be home :-).
While it was slow going in the beginning, once my surgeon got every thing started rolling; everything fell into place. I arrived on Sunday at about 1pm and got into a semi private room by myself with Li Ming pretty quick on the 11th floor. Then blood tests and urine tests were done. On Monday my angiogram was scheduled; but due to several emergencies, was rescheduled several times and then cancelled for the day after the neurosurgeon/neuroradiologist determined that the emergencies were going to take until well past 9pm. Thank goodness as I was starving not being able to eat after midnight the night before [g].
On Tuesday Dr. V operated on my left arm and my skull. He removed my neuroma and the osteoma. On Wednesday I had my EEG and Spect Scan. On Thursday I had the angiogram which showed NO residual AVM or any anuerysms which is great news!
I was on IV antibiotics for the skull surgery to prevent infection every twelve hours and saw Dr. V before being discharged on Friday. He said while my biopsies will not be back for another week or so, he was very sure that both biopsies would come back negative. He also said that both EEG and Spect scans showed no brain damage or seizure activity except in the AVM and stroke area in the left frontal lobe which is also good news. He felt that I should continue with all of my current meds unless my seizure activity changes. He also mentioned that I will not need another angiogram, EEG or Spec scan in the future. Yippee!
My arm doesn't hurt at all and the back of my skull is still painful but getting better each and every day. I get all of my stitches out next Thursday. Hopefully, this will be my last visit to Jackson Memorial Hospital for skull surgery :-).
As usual, Li Ming was the biggest hit on the wing and had lots of visitors. The staff couldn't help comment on how well behaved and how beautiful she is. Some of the staff even remembered her from our last visit in Jan 2004.
Lots of hugs and love.
Special thanks for all of the phone calls and prayers.
Update: 2 August 2005
Hi everyone. If you think I dropped off the face of the earth; well, I didn't [smile]. The last four months have brought lots of excitement into my life. Just when you think life is going to be back to normal, as if that is a word should be in my home dictionary , life goes wacky again.
I fully recovered from my surgery with Dr. V. Dr. V released me from my post op with flying colors and didn't want to see me for three months. Whoopee! Then the "girls" and I went to our agility trial in Orlando where Tia had her ?coming out'. What a trooper. She received three out of four Q's in Novice agility and game home with three Second Place ribbons. Li Ming ran great in her Excellent agility runs but had an error or over time on each of her runs. Li Ming definitely entertained the crowds as usual.
I started a small project ? cleaning out my garage. I tore down all of the shelves, painted the walls, floors, and floor. I then started the onerous task of putting new shelves up and hanging up everything - including all of the agility equipment that I have built during the past two years. I thought when I started this project that it wasn't a big one (ha ha ha). Two months later, I finally finished this once in a lifetime project [g].
After returning from Miami, my psychiatric increased my dosage of Cymbalta. Unfortunately, this increase started giving me some horrible side effects such as high BP, nocturnal seizures and facial sweating. Before going to Orlando, I had to go back to see him about either changing the meds or reducing the dosage. He decided that I should go back to 30mg of Cymbalta that we both knew this wouldn't work.
During the Fourth of July weekend, we were at the Dog Agility Competition of Florida in Orlando with our team when Li Ming became sick. Thankfully one of the handlers was a vet in the Orlando area and pointed me to a wonderful vet clinic that was opened on Saturday. This vet took us in within 30 minutes without an appointment, examined her, took urine analysis, an x-ray, and determined that she had bladder stones and required surgery. He gave us the x-ray and antibiotics to take home once he learned we lived 4 hours away. After taking Li Ming to three different local vets during the past 5-6 months to try to find out why her behavior was changing and her agility performance was erratic; it took a vet out of the area to find out what was wrong with my girl. I had to pull Li Ming from the team competition. Tia ran Excellent both days and brought in two Third Places for our team. It was a long trip home with a very sick fur baby.
Now I'm on a dosage of anti-depressants that doesn't work, I have a sick girl on my hands, and the vet's office is closed due to the holiday. Talk about a basket case! I call our vet on Tuesday morning for an emergency appointment. Dr. Larry gets us a referral that day to FL Vet Specialists in Tampa, and we were back on the road on Wednesday for Li Ming's appointment on Thursday and surgery on Friday. Thankfully, Dad lives in Sarasota, which is only about 1-1.15 hours away from Tampa. We met with Dr. Reems at FVS and a CT scan tells us that Li Ming had lots of stones in her bladder but her kidneys and liver aren't affected. He tells us that her surgery is scheduled for the next day, and he wants to keep her for two nights to manage her pain. I bring her back to Dad's where we spent the night with Tia.
Li Ming and I are back at FVS by 7:45am where I drop her off for her surgery. What a depressing day for me. As most of you know, she is not only my baby and agility dog, she is also my seizure alert dog. Her surgery is completed by 5pm, and I speak with Dr. Reems who informs me that everything went very well. He also tells me that Li Ming had over 50-60 stones in her bladder, they did an x-ray to verify that all of the stones were removed, the intubation tube was removed and she is sleeping peacefully. They also gave her demoral shots for the pain and put a Fentanyl pain patch on her. I pick up Li Ming on Sunday afternoon, and she is on very limited exercise; meaning I have to pick her up for everything. We stay at Dad's until Monday and she starts with diarrhea. I call the FVS and let them know; they feel that it's because of the antibiotics or the Fentanyl patch. So we drive home.
Three days later, Tia comes down with the same symptoms. Now I have two sick dogs and neither the vet at FVS nor my local vet believe me when I tell them that Li Ming picked up something at the hospital while she was there and gave it to Tia. Grrrrrr! And no word from FVS as to the type of stones and the culture analysis that was sent to Minnesota and its 10 days and counting.
I go back to my psychologist and complain that I'm really depressed, the meds aren't working, and the increased dosage gives me too many side effects. The neurologist has already increased my Topomax from 50mg a day to 50mg twice a day and wants me to increase it to 75mg twice a day for the nocturnal seizures. My psychiatrist has decided that this is not the time to mess around changing my meds so he decides that if I take 30mg of Cymbalta one day and 60mg of Cymbalta the next and alternate, it's like I'm taking 45mg and that should prevent the nocturnal seizures. When I explain how expensive his fix is ($200 for both Rx with no prescription coverage), he gives me samples to get me through this.
Two days later, both of my girls are now sneezing and reverse sneezing all of the time with some coughing. I get desperate and contact my neighbor who lives in Indiana during the summers, a vet, and knows my girls thoroughly. I tell him everything that is going on and how the girls are acting lethargic, not eating, sneezing, reverse sneezing, etc. and he feels they need to get on some antibiotics. He says that he will contact my local vet and talk to him. I also call a specialist at FSU in Gainesville who is a specialist and researcher on the new Dog Influenza Flu for the country and talk with her for 45 minutes and get great info from her. I finally bring Tia back to my local vet (I brought both girls in a few days ago) and we see his partner, Dr. Kirk as Dr. Larry is now on vacation. He listens to my entire dialog and examines Tia thoroughly. Her lungs are clear, her temp is normal, her diarrhea is gone thankfully for the meds that Dr. Larry gave both of the girls, but he hears something in her upper respiratory tract that is causing the sneezing and probably a sore throat. He gives me an antibiotic for Tia and Li Ming for five days. Three days later, my girls are starting to feel better. One week later, they are eating like food is going out of style, they are playing with their toys, they are wrestling with each other, and lastly, they are giving their Mom wonderful kisses again. It's been a month since I have seen Li Ming doing so well. She is still recovering from the surgery; but she is finally on the right road. Tia is back to being the adorable Shih Tzu guard dog of the house walking the perimeter of the lanai chasing the lizards and toads and running to the front door whenever the doorbell rings; even if it's the doorbell on the TV - LOL. She is back jumping with springs on her feet and playing fetch 3-4 times a day.
On Thursday, July 28, I had eye surgery. This surgery was to correct the loss of my superior visual field, dry eyes, fatigue while reading, my lower lids moving outward (probably part due to heredity and part due to my stroke), and hopefully my right peripheral vision which was lost during my AVM bleed. Dr. Larson was very hesitant to do my surgery until he had full approval from my neurosurgeon and did extensive testing on my visional fields, my corneas, and my retinas. I get my sutures out on August 11th. It will probably take another 4 weeks until I don't scare the local kids - I look like the female version of "Rocky Raccoon" [g]. Thankfully Medicare B covered this expense.
This Thursday I also have to have some gum work done by my dentist. Thankfully he does the periodontal work with a laser and will do the first treatment on the left side of my mouth. Then we wait and see how this works for me before continuing the remainder of my mouth. Unfortunately, this isn't covered but I do get a 25% off with my discounted Dental Plan card that helps reduce these costly treatments. This was probably caused by my years on Dilantin, but one can never be sure.
Lastly, Li Ming's stone analysis report came in showing that she had Struvite stones. These stones are normally caused by a bacterial infection. Unfortunately we don't know what type of bacteria as FSV checked the wrong box on the "culture" form and didn't get the results back that we needed. Li Ming and Tia will not be doing any agility for the next month due to the August heat and the opportunity to fully recover. Tia will start back in Pet Therapy on August 8th and Li Ming will start back the following Monday. They will alternate Mondays from then on. Once we get Li Ming's next culture results back and they are good, we will know that we are on the road to full recovery.
During the past month or so, I have tried to keep up with everyone's update; but sometimes I have not been so successful with so much on my plate. I hope that everyone is doing well. I want to thank all of my friends that have been going through the last month with me for all of the prayers, support and wonderful e-cards and phone calls - You have been wonderful!!! Love and hugs to all.
Update: 6 February 2009
Well, I can't believe that it's 3.5 years since my last update. Yikes!!!! Where does the time fly? I have made several changes in my life and have tried to keep out of the hospital. Thankfully, my last cranioplasty surgery (my 5th and hopefully the last) was two years ago before Dr. V moved from Miami to Hershey Medical Center in Hershey, PA. I sure do miss him.
I have fired my psychiatrist. The only reason I was seeing a psychiatrist was to get my anti-depressants and he was trying all various brands of anti-depressants rather than keeping me on the two that I knew worked. Well, he made the mistake of putting me on Prozac that caused daily Absence Seizures until I realized what was happening to me. So I asked my Primary Care Physician if she would handle my anti-depressants for me and she has done a wonderful job; I have not had any seizures since then.
I switched neurologists to one that specializes in Seizure Disorders. At first I wasn't comfortable with him but we now get along really great. He has my best interests at heart and is always being sure that my tests are up to date. Just recently he found a "blip" on one of my carotid arteries and I just had a CT Scan of my carotids to be sure that they aren't block and my brain just to be sure that no AVM's have returned. I'll get those test results in the next three weeks when I return to see my neurologist.
As to my immune disorder, that's a really long story. But the short of it is that I wasn't getting my appointments at the hospital every month so my Immunologist set up home health visits every week for one month to teach me how to do it myself. So I now do my IVIG infusions every Wednesday via sub-Q. Because I don't use my Bard Port any longer, I had it taken out two weeks ago. My IVIG levels are more consistent than ever as I get my meds every week.
For the last three months of last year I had several bouts of sinus and ear infections so I was sent to an ENT specialist as my immunologist couldn't resolve them with antibiotics. I even ended up in the ER on Christmas Eve with a severe ear infection that caused me to lose hearing in my right ear. So I had an ear test that shows that my hearing has been restored and normal, more CT's and I'm seeing the ENT specialist next week for the final results.
As to my "kids", they are doing great as you can see from the picture above. After the Shih Tzu Nationals in April of 2008, I retired Li Ming (now 9 years young) due to a bad disc in her back but she has come out of retirement to run Jumpers only every other day of competitions. She's having a great time. Tia, who will be 5 in April, is over = way to her MaCH (Masters Agility Championship) title, the highest AKC Agility title. She's my little sparkplug and social butterfly that loves running agility with her Mom.
In late October 2008, the girls and I rescued a black male mini-poodle from Ocala when he was 8 months old. The poor guy was kept outdoors and his hair was sunburned and very matted. He also had a bad case of intestinal worms that took 6 treatments to get rid of. Tia has helped Remy to heal and to learn that this is his forever home and the two of them play fetch and tug every day. It took a little longer for Li Ming to accept Remy but she now plays with Remy and chases him through the house. Remy started agility training three months ago and is going to be a phenomenal agility dog. He is so fast, a quick learner and loves to have a job. He is also very lovable and hasnt yet met a person or a dog that he doesn't like.
I started teaching agility with my agility instructor about 1.5 years ago; first teaching Intro to Competitive Agility then Novice Competitive Agility. In the last six months, I also started teaching Advanced Competitive agility as well when my Instructor's classes got so large that we had to split them in half. I really love teaching others doing what I love. I have kept in touch with many of my friends who I met through this group. I do miss Bill and know that his spirit will always remain with us.
Hugs to all.
Update: 14 June 2009
Hi everyone. I hope that my short update finds everyone doing as well as they can be, and then some. While we can't always plan what happens in our life, we can handle what comes into our life with strong determination and attitude. I have also learned that you keep the people in your life that enhance your life and allow those that are rude or complaining about everyone or everything to hang out with someone else. Life is too short to "second guess" decisions; sometimes you just have to go with what you heart is telling you and live with what you got.
In mid May, I was busy cleaning my house in anticipation for my visit with Catherine & Errol Lymberry from Australia (another of our family members) and her daughter, Emily, who is currently living in California. I had the inside of my house cleaned except for the master bedroom and bath and decided that the pool area and cage really needed to be cleaned. Unfortunately, it was a hot day and I was really too tired to take on such an extensive job. Well, as life would have it, sh-t happened. I was power-washing the top part of the cage over my pool and took a misstep. I ended up stepping on the edge of the pool that didn't exist and had a really bad fall. To make a long story short, one fire truck, an ambulance and a trip to the ER; it turns out that I fractured a back rib and tore the meniscus in my right knee. My friends won't be calling me "Grace" for quite awhile.
Thankful for wonderful friends and neighbors who picked up Catherine and crew from the airport and walked the kids while I was using a walker; Catherine, Emily, and Errol enjoyed our visit immensely. While I wasn't able to show them around the area, they did get to see the sites in our area while we enjoyed our evenings together over dinner, wine, desert and good company. All of my three dogs loved having three new people to hold and play with them. (Oh yes, if I forgot to tell you; I rescued a male mini-poodle named Remy who has fit wonderfully into the household). Catherine and Emily were so kind to walk the kids whenever they needed a walkie. Errol and Remy got along famously; they were the only two males in the house surrounded by five women.
Unfortunately my visit with Catherine, Emily, and Errol came to an end too quickly and they had to leave on May 23 for Miami for a direct flight to L.A. A great time had by all; but life goes on. That Sunday, May 24, a friend of mine drove me to Palmetto where my agility trainer ran Tia for me. She ran great for Daniel and Daniel acknowledged how difficult it is to run a toy dog in agility.
I had my knee surgery on June 8th, which was very successful. I get my stitches out on Tuesday, June 16, and hope to be able to get back to agility within the next four weeks or so. Meanwhile, I have Daniel on stand-by to run if plans change.
While life may have some sidelines that you don't expect; it also has some unexpected surprises along the way that brings you smiles, hugs, and more. Have a great day.
Hugs and love,
Candy
Update: 24 May 2010
I'm just amazed at how quickly life passes. I thought that when the New Year came along that everything would slow down and be calmer. Unfortunately life doesn't always ask what we request.
Once again I was in the hospital via another ambulance trip. Gee whiz if this keeps up, I may have to purchase my own. I was put into the Cardio Unit as my pulse was down to 45 and no one bothered to read my Medic Alert or call them. If so, they would have known that my pulse runs from 45-60 bpm. After much heated discussion with nurses and doctors, I told them that if they didn't start to pursue my severe abdominal pain and start to give me pain meds, I would sign myself out and find a hospital that listened to the patient. That got the ball rolling as they finally started to run tests to find out why I had such horrendous abdominal pain and found out that I had a kidney stone that blocked the end of my eurthetha to my bladder. Once they was determined after being in the hospital for 3.5 days, a specialist came in and I had surgery that afternoon. What a relief; I was relieved of the pain and discharged from the hospital that night. Thankfully I have wonderful neighbors who not only brought me clothes and other necessities, but also took care of my dogs while I was in the hospital for 4.5 days. What a blessing they are.
I March, my BFF was diagnosed with ovarian cancer and is undergoing chemo treatments before her specialists will do surgery. It was a tough situation in the beginning as the diagnosis was not good and she didn't have any insurance (her Medicare doesn't kick in until September 2010). Thankfully, agility and dog people got together and put together about $1,500 in donations to help pay for all of the medical tests she had to undergo and she has been accepted in a program at one of the top 10 Cancer Centers in the country, Moffitt Cancer Center in Tampa. Claudia is doing much better and has had three chemo treatments and will have her surgery in three weeks and then another chemo treatment after that.
My other dog friend lost her husband to an undiagnosed type of cancer last month and has been suffering depression at her loss. She also lost her Father about 6 months ago. She and her husband have been together since high school. Since she lives 4 hours away, I have tried to keep in touch with her via the telephone and email - but I know it's not enough.
After all of this, my neurologist started changing my seizure meds, as he didn't want me to have any more kidney stones. It turns out that Topomax, which I was taking for seizures and my migraines causes kidney stones so I had to stop taking that. He also said that I had to stop Zonegran to avoid future kidney stones. We tried Keppra first, but not surprising, with my intolerance for many of the seizure meds, my body didn't tolerate it. Our next step was to try Trileptal. Thankfully I've been on it for four weeks with no side effects and am in the process of weaning off the Zonegran, which will take about three more weeks. My immune disorder has stabilized thanks to my weekly sub-Q therapy that I do at home every Wednesday. I still get sinus infections every once in awhile, but have not had an ear infection and I'm not as tired as I used to be.
Two days ago, my Dad was in a horrendous car accident coming home from fishing in Venice hitting a tree and rolling his car. He has been in Sarasota General Hospital since then with the doctors trying to figure out what happened to cause this accident doing all kinds of tests, including MRI's, cat scans, etc. After all of the tests results came back, the doctors determined that my Dad's heart stopped and he passed out; he is scheduled to undergo surgery for a pacemaker on Monday. My Dad is in a lot of pain and it appears that his back has taken the brunt of the injury along with a broken rib; he can't do anything but lie flat on bed. He is lucky to be alive as he is oxygen and had that in his car; his car is totaled with the engine falling out of the car, all of the windows broken, all of the doors are smashed in. Considering everything that my Dad went through, I know there were angels watching over him as there are many scenarios that pass through my mind that could have, should have or might of have been. Meanwhile, I will be at the hospital on Monday to see my Dad through this surgery.
In the meantime, I have been still awaiting news from Chase/Morgan bank as to my home loan modification. It's been over 15 months since I started the process and I have inspectors coming to the house every month and get requests to send more documentation every month. Then to add to this, the State of Florida has deemed that my property insurance company is no longer solvent so I had to find another insurance company and pay them to insure my home. The state of Florida is trying to get my money back from my insolvent insurance company at the cost of $100 per household. What a deal. My concern lately is not having a place to live and having to leave my house with nowhere to live.
I know that everything that is going on in my life will get smoother and more on an even keel, I try to stay positive, take one day at a time, and am thankful that I have my friends and pups to keep my on an even keel.
My thoughts are with this wonderful family and I hope that each and everyone of you are keeping positive and on the road to recovery. Sending hugs and prayers your way.
Update: 25 July 2011
Hi all. I hope that this update finds everyone doing well. It's been over a year since I've updated my story and lots has happened.
My little Shih Tzu girl, Tia, gave me a wonderful New Year's gift. On December 31, she got her MACH in agility that is the highest award that you can get in agility. I was so proud of her and all of her work and ability to focus on her agility trailing. As of this day, she has earned 18 Double Qualifying scores for her MACH2. For the past 3 years, Tia has been #7 in the country for Shih Tzu AKC agility.
My crazy rescue poodle, Remy, has been having a great time in agility as well. Last weekend he got his Open Jumpers title and is now running in the same class as his older sister. Remy is a typical mini-poodle which a few focus issues; but when he's running agility, you can tell how much he loves it. In another year or two, he's going to be a phenomenal agility dog.
Li Ming has been enjoying retirement from agility. We still practice a bit just to keep her in shape. She is going to be 12 in November and you would never know it. At her last annual exam with the vet, he told me that she looks half her age and is in great shape.
As to me, I had a slight scare when my immunologist told me that he saw that I had a droop in my smile. He felt that I had a small stroke so I had to go for extensive testing. While they couldn't see any changes in my brain; they didn't compare these tests with my older tests. In about a month or so, my droop went away which makes me very happy.
I had cataract surgery in June on my right eye. The eye surgeon wasn't sure how it would come out because I had laser surgery on both eyes after my brain surgery as the eye specialists could not get my vision corrected with contacts or glasses to an acceptable level. I'm happy to report that the cataract surgery went very well and I can see 20/40 only a month after surgery. I'm schedule to get the left eye cataract surgery done in the beginning of August and hope that will go as well as the first surgery.
My last and final update is that I now have a financial advisor who has helped me be able to keep my home and has done a wonderful job of making money for me with my pension and 401K monies. Kevin has taken a lot of stress out of my life and I'm grateful for that. Since my surgery and stroke, I just haven't been able to be able to analyze stocks and bonds. We talk every month and I'm so grateful for him and his talent at keeping my portfolio making money.
I thank this site, all of my friends and my dogs, for helping me stay upbeat and centered; without them, I know that my life after my AVM would not be as good.
Hugs to all,
Candy
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