TALK TO A
Established April 15, 1995
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With retirement from my 25 year government employment in sight and having earned recognition for my volunteer accomplishments, I thought life was pretty good! During the 80's I had struggled to finish raising 2 daughters alone while working full time and earning 3 degrees. (AA, 81, Rose State College) (BA, 84, Univ of Central Oklahoma) (Master of Human Relations, 86, University of Oklahoma) I had a comfortable income, most of bills were paid and I was getting to enjoy life. My volunteer work led me on a journey that was satisfying and personally rewarding. I received state and national awards for my efforts in Communications for the Air Force Association. I was listed in 97-98 Who's Who of American Women and 98 Who's Who in America. My grandson, born in 1995, was one of life's joys. My folks, who were senior citizens, still enjoyed good health. My daughters were launched in their own lives. Then bad news hit. I had an AVM.
I am a 56 year old single female who walked 2-3 miles every day for the past 10 years. In January 98, my noontime walks at work started getting shorter. I was experiencing dizziness which I thought at first was the lighting in the industrial area at Tinker AFB where employees walk during lunch break. At night when I would wake to go to the bathroom, my equilibrium was impaired to the point of needing to hold onto furniture and the walls to get to the bathroom. I thought I had an inner ear infection.
On February 21, I had an MRI which was ordered by my Ear, Nose and Throat Specialist, Dr Michael McGee. The MRI showed an AVM in the right temporal lobe. In 1996 I had been treated for an inner ear infection by a family doctor. I took antibiotics and antihistamines and subsequently battled diarrhea for 2 months. My last working day at Tinker AFB was March 4 when I was taken by ambulance from my office area to the local hospital. The diagnosis was heartburn and spastic colon. All of us thought I might be having a stroke.
On March 12 an arteriogram was performed by Dr Georgianne Snowden to further define the AVM which was 2.7 X 1.8 in the anterior inferior right temporal lobe. Dr Snowden discussed my options (gamma knife vs surgery) and told me about Dr Duke Samson in Dallas.
Dr Stephen Cagle, my OKC neurosurgeon, met with me two times to interpret my arteriogram and discuss options. He referred me to Dr Duke Samson in Dallas for a second opinion.
On March 31, my sister (who flew in from Virginia) and I made our way to Southwestern Medical Center in Dallas to consult Dr Duke Samson. Dr Samson has performed more than 950 AVM and aneurysm surgeries and is considered one of the top 5 in the field.
We scheduled surgery for April 15. Again Dr Samson explained that the gamma knife was an option. My sister and I decided against the gamma knife because the procedure took 2 years. The way surgery was explained to us, I would be back to work in 3 to 6 months. (I wanted to take care of the problem and get on with my life.)
My sister and I drove down to Dallas on Easter and I checked into Zale Lipshy Hospital on April 13. Particle embolization to close off the AVM blood supply was performed by Dr. Phil Purdy on the afternoon of April 13. I was asleep for the embolization. The procedure was successful and we all rejoiced.
On April 14 I took a series of Neuro-psychological tests. The psychologist kept telling me it would help me later on. I wanted to take a nap more than I wanted to take tests.
On April 15, Dr Samson assisted by Dr Michael Horowitz removed the AVM. They shaved my head along the right hairline and pulled the rest of my long hair back in a rubber band. (I wasn't bald!)
An incision was made inside the hairline from the top center of my head down to above the right ear. A bone flap was made above the right ear to get to the AVM. I'm not sure how long I was in surgery or in the post op ICU before being moved to my own ICU room in the early evening. I spent the night in my ICU room before being moved to the neurosurgical ward the next morning. At midnight on April 16 I was taken downstairs for a CT scan.
The next morning the doctors told me that everything looked good. The AVM was gone. My care at Zale Lipshy Hospital was first class. Patient care at ZLH is a fine art. The nurses and medical staff were caring, compassionate professionals. I was discharged on April 21 after 5 days recovery. They had me sitting up and walking the day after surgery. We stayed with relatives for 2 nights before driving back to Oklahoma City on April 23. (The doctors said the 3.5 hour drive was probably less stressful than flying.)
After a week at home, my sister returned to Virginia. I was pretty much on my own. The first few weeks after surgery I was so swollen that I didn't feel much. I couldn't take pain pills because they made me nauseated. As the swelling in my head subsided, I was noticing problems.
On May 17 and May 29 I went to the Mercy Hospital ER because it felt like the air passages in my throat were swelling closed. X-rays were taken May 17 to make sure nothing was lodged in my throat. Everything was OK. On May 29 I presented with high blood pressure and it felt like the air passages were closing up. The right and left soft pallets had collapsed. My throat was inflamed. I was told I would be OK because there was another air passage behind the soft pallets. I was given 10 days worth of Ampicillin.
Later, my ENT, Dr McGee prescribed Penicillin for the infection for another 10 days. I could hardly open my jaw. The muscle on the side of my head that had been cut in surgery helped control my jaw and throat muscles. Dr McGee had me do jaw stretching exercises.
I flew to Dallas for checkups on May 19, June 16 and September 15. On June 16 I was examined by a throat cancer specialist, Dr Marple, who determined my throat was functioning normally but inflamed. He prescribed a round of heavy duty Motrin.
My throat wasn't the only thing causing trouble. My stomach was rebelling. I took Reglan for about 6 weeks after surgery. While in the hospital I threw up and passed out about 4 times. (no seizures) My stomach didn't like Dilantin which I was taking to prevent seizures.
By August I was experiencing a great deal of stomach distress. I had lost weight down to 114 from 127 post-surgery. I was burping and belching, had a bad odor in my mouth, and felt like I had a knife in my stomach. My internist, Dr Dustan Buckley, diagnosed stomach reflux and prescribed Prevacid.
I had become quite weak and was getting to doctor appointments in taxis, using wheelchair service at the hospital complexes. My sister and my psychologist, Dr Susan McCurdy arranged for me to enter Deaconess Hospital for evaluation and treatment.
My stomach was scoped by my Gastro-intestinal specialist, Dr Robert Rankin. He confirmed the stomach reflux diagnosis and said that my stomach was functioning normally, otherwise.
Several psychological tests were administered as well as an EEG. My psychiatrist, Dr John Andrus diagnosed Anxiety. I had all the symptoms...dry throat, dry mouth, tingling in extremities, headache, worry, stomach problems, catastrophic thinking, etc. I also had lots of physical pain in my stomach, the right side of my head and my jaw. I tend to loose my equilibrium when the muscles on the right side of my head start pulling. The pain continues today.
When I went to Dallas for my September 15 checkup, I was scheduled for a Neuropsychological evaluation and the Physical Capacity Test on September 29 and 30. My Dallas neurosurgeons said to stop taking the Dilantin. The weaning process had been started in August by my OKC doctors. My doctors in Dallas assured me that nothing was done in surgery that is causing my present condition.
My psychiatrist, Dr Andrus, says I am extremely sensitive to medication and is treating me with therapy rather than medication. He prescribed Ativan as needed for panic attacks. My psychiatrists and my internist believe that the Dilantin caused the stomach reflux, hitting the muscle between the stomach and the esophagus.
After my release from the hospital, I participated in Integris Decisions Outpatient Group Therapy all day for about 2 months. I now attend PCOP (Professional Corp of Psychiatrists) Outpatient Intensive Group Therapy for 1.5 hours every morning.
The issue of whether or not to return to work has been a big source of my anxiety. Originally it was thought that I would recover from surgery in 3-6 months and return to my office work at Tinker AFB (the largest AF depot in the US). My doctors kept telling me that there was no reason I couldn't return. All I knew was that I felt like I'd been hit by a train. At one point I thought I would be fired from my job and lose all my benefits for being AWOL. It wasn't until I talked to my psychiatrist, Dr Andrus, that I was able to communicate what was going on and get some assistance.
From 3-6 months I was driving ½ mile to the corner grocery store and drug store. Month 7 and 8 I started driving 5 miles to group therapy everyday instead of riding in the handicapped van. (Tinker AFB is 25 miles from my house.) The first 6 months I could use my home computer about 15 minutes at a time. It hurt my sinuses to wear glasses. I had weakness in my arms and used the mouse on the corner of the chair I was sitting on. I sat in a half reclined position with a pillow in the chair to support me and still do. (My job at Tinker requires almost 8 hours of computer use.)
My annual and sick leave ran out after 3 months. I have had no income since Jul 1 and I am living off savings. None of my doctors believed that I needed disability retirement at first. Finally 8 months after surgery my family doctor, Dr John Brown, filled out the paperwork after reviewing the evaluations from Dallas and from my psychiatrist. Dr Brown also enabled me to get my temporary handicapped parking permit which is a dire necessity for me.
I am making slow progress but none of the doctors will predict when I will be healed. I understand it takes 1-2 years for the brain to completely heal. Eating is still a struggle. When I entered Deaconess Hospital, I was eating bread, rice and water. I am still eating a very bland diet of chicken breast, rice, banana muffins, green beans, cream of wheat and turkey sandwiches. I weighed 121 lbs at the doctors office yesterday.
Sleeping is very painful at night. My head hurts when I am lying down. There is pain in my jaw, the right side of my head and in my stomach. My jaw falls open at night and I awake with dry mouth, dry throat and parched lips. Sometimes I sleep biting my lower lip (causing my bottom teeth to shift).
In addition, my arms and legs lock up and I awake with stiff arm and leg muscles and stiff neck. The head of the bed is raised higher than the foot of the bed to keep stomach juices flowing downhill at night.
I hope that someday the physical pain will go away. In the meantime, I am learning to live with the pain, turn negative thoughts into positive and refocus outside the pain. I'm learning to appreciate simple things and be proud of small accomplishments.
I am grateful to my therapists and members of the group who have become my family through this process. I am grateful to all my email friends who stay connected with me. I am grateful that my mind is still sharp and that I've had no seizures.
Another source of anxiety for me during the healing process has been the noises in my head. I was told after surgery that I would hear funny noises for some time to come. Sure enough, I have. The first few weeks there was a lot of "snap, crackle, pop" which I called rice krispies. (I believe that it was the air that got in my head during surgery.) I was cautioned that if I heard a "whissh" I would need medical attention right away. For a couple of months I was hypervigilant waiting for the big whissh. One particularly scary sound was the "snap, bang" in my sinus area. I asked several doctors and nurses what was causing the sound. No one knew. They told me not to worry.
On my September 16 visit to Dallas, Dr Horowitz explained that my sinuses were healing from the air tube put through my nose during surgery. I wish someone had explained that to me 5 months earlier.
Another annoying symptom was the ringing in my ears. The first few months after surgery, I slept with the TV on all night to drown out the noise. Later on, I slept with my radio on all night long with soft music. In September, 5 months after surgery, I could sleep in quiet.
To ease the noises and the pain, I slept at a 45 degree angle the first 2 months after surgery, using 5 or 6 pillows to prop myself up. In August, I raised the head of the bed so that my head was higher than my feet. I use one pillow and my waffle mattress pad which gives me gentle support.
It is now 8 months after surgery and the ringing in my ears is not as loud as it used to be. It is most noticeable as I am waking up in the morning and need to go to the bathroom. I still keep the radio playing softly in the daytime. I am very sensitive to loud noises. I frequently wear ear plugs in public places like airplanes, movie theatres, watching other people's TV's, and stores with loud music or announcements.
Update 16 Feb 99
It is now the 10th month after surgery. Progress is slow but at least my fear is becoming more manageable. My stomach and colon continue to be uncooperative. My head continues to have intermittent pain, pressure and lack of equilibrium. I am now taking Prisolec instead of Prevacid for stomach reflux/acid, thanks to my insurance company. I am now able to tolerate vitamins after not taking any for about 7 months. I can't help but wonder if the Vagus nerve which controls muscles in the throat, stomach and colon has been injured in some way.
At Christmas time I flew home to be with my folks and my sister's family using wheelchair assist to get around airports. It was a wonderful feel of security going home to the house where I grew up, sleeping in my old bedroom, and sharing three meals a day with the family (even though I ate my bland, low fat diet).
Tinker AFB is trying to complete my disability retirement package to send to Office of Personnel Management in Washington for approval. I had my government disability physical on Jan 26 and I drove myself all the way to Tinker and back (25 miles each way). When it is approved, I am told it will be retroactive back to Jul 1 which was my last paycheck. Since I have had no income for 7 months, the back pay will help.
Finances continue to be a concern. I used up all my mental health insurance benefits in October. I am too young for Medicare and I am not eligible for Social Security disability because I am an Federal employee under the old retirement system. My health benefits started over on Jan 1 but I have a $250 deductible for mental health and another $250 deductible for physical health.
I have started walking (strolling) at the mall for 15 minutes everyday. It is hard because of the problem with equilibrium and the pain, but my psychotherapists tell me that it will help everything go back into place and build strength.
I continue to go to group therapy a several times a week. I remain under the care of my psychologist and my psychiatrist. Recovering my physical health is dependent on recovering my mental health and visa versa. My therapists and the group members keep me on the right path.
This web site has been a great support to me. I have met wonderful friends here. Many of us communicate with each other using email. We share jokes, information, encouragement and hope.
Speaking of support, at Christmas time, the neighbor section in my old division at Tinker AFB gave me a wonderful gift. Two of them delivered a basket full of personal items plus a $300 check. I used the check to pay for my airline ticket home. It was heartwarming to know that so many people cared.
Update 02 Mar 99
The insurance office in Personnel at Tinker AFB allowed my health insurance to lapse as of Dec 6, 1998. Apparently, my supervisor did not provide an SF50 to Personnel notifying them of my LWOP status effective since Jul 1, 1998, so that the government can continue paying my premiums which I will have to pay back with my disability retirement income when it is approved. My insurance carrier is waiting for Tinker AFB to correct their paperwork so that my benefits can be reinstated. On March 3, 1999, my health insurance company notified me that my benefits are active.
My disability retirement package is on its way to Denver for a pay and leave statement covering the past year. When that is completed, the package will go to Office of Personnel Management in Pennsylvannia for more data. When they complete the task, the package will be forwarded to Office of Personnel Management in Washington DC for approval. The retirement office in Personnel at Tinker AFB says it will take 3 weeks to 3 months after it leaves Denver for OPM to review the package. Meanwhile, I have had no income since Jul 1, 1998.
Update 15 Mar 99
US Senator James Inhofe's office (R-OK) responded to my request for help in processing my disability retirement. His staffer told me that they will expedite the process so that it will not take an additional 3 months. It's a relief to get assistance and to know there will be tracking and accountability as the package makes its way to Denver, Pennsylvania and on to Washington DC.
My internist, Dr Dustan Buckley has changed my stomach medication from Prilosec to Propulsid. The pain in my stomach and head is increasing rather than decreasing. Hope the new medicine works better than the old. I can't understand why it is so difficult to control the pain.
I realize that I have not discussed my spiritual life anywhere in this narrative. My relationship with God and His son, Jesus, is a source of comfort and strength. I believe that God is in control of my life. During this long recovery, I read my Bible, watch televised religious programs (particularly "Hour of Power"), pray, share with friends, and am comforted by the prayers of relatives, friends and various church prayer groups across the country. The hospital chaplains were a blessing. At Zale the chaplain prayed for me and the surgeons while I was unconscious in pre-op (my sister was there). At Deaconess the chaplain led Sunday church services on our ward. At Zale one of my nurses prayed with me everyday. My email friends inspire me with Bible verses, prayers, religious art and personal experiences. My values and priorities have changed. I'm no longer competing, acquiring or validating. Relationships are more important to me. I'm taking one day at a time (sometimes one hour at a time).
Update 12 Apr 1999
I received calls last week from the offices of Senator James Inhofe (R-Okla) and Senator Don Nickles (R-Okla). They reported to me that OPM in Washington has approved my disability retirement. In about two weeks, I should be receiving my first interim payment. Apparently, there is a discrepancy between the date OPM says my disability started and the date my application says it started. The senators' staffers assured me that they will continue to work on my case until everything is resolved.
After my disability was approved by OPM, I was able to enroll in Medicare. Those benefits become active two years after my disability started. It is a relief to know that I will finally get some financial assistance.
I reached another milestone last week. My teeth were cleaned for the first time since surgery. The plaque on my teeth was heavy due to six months of Dilantin and dry mouth due to various medications and my jaw falling open at night. It felt great to feel clean teeth again.
Update 17 Jun 1999
Senator Inhofe's office was able to move my disability retirement effective date back to June 17, 1998. That will provide me with 10 months of disability back pay which will help with medical bills. My mental health bills continue to grow because Federal Health Insurance is inadequate for mental health coverage. (30 office visits a year for a chronic condition won't cut it.)
I saw my internist last week. Dr Buckley want to wean me off prescription meds for my stomach. She says I have an extremely sensitive central nervous system and a very low tolerance for medication. I will use Gaviscon instead of Prilosec, continue to reduce Propulsid, and continue to use Milk of Magnesia as needed. I am up to 126 pounds but continue to fight weakness, lack of balance and pain.
My ear, nose and throat specialist, Dr McGee, made an appointment for me to see a new neurologist, Dr Stephen Smudland. Lab tests were done at Mercy Hospital. Dr Smudland believes that the pain in my head is vascular headache which may occur after head surgery. I have my next appt on June 23 to discuss test results. This is the first time I have seen a neurologist or neurosurgeon in 9 months.
I continue to go to group therapy 1 or 2 times a week. I continue to see my psychologist every other week and my psychiatrist every other month. I benefit from attitude adjustments and emotional support.
I go to the Mayfair Senior Center 2 or 3 times a week for 2 1/2 hours in the morning. We play cards and dominos, and we do 30 minutes of gentle exercise (I do what I can). Sometimes, I eat lunch with them. Their friendship and encouragement is very valuable to me.
My friends at the AVM Support website continue to be a source of friendship, emotional support and shared information. Our special web site is our window to the world and our collective voice. God bless each one of you.
Update 19 Sep 1999
In July my neurologist requested a CT Scan to see if there is anything causing the pain and balance problems. The good news is that there is no sign of my AVM (no regrowth) and no leaks. To my surprise I learned that I have anuerysm clips from the surgery. I was advised not to have any more MRI's as the anuerysm clips could be magnitized by an MRI causing them to move (slip).
I tried Neurontin for pain but found the medication had too many side effects. The neurologist will prescribe another type of pain med if I request it. I seem to respond better to psychotherapy for pain management than medication.
Sen Inhofe's office is continuing to help me recover 6 1/2 months of disability backpay that the government owes me. I am getting monthly disability annuity payments.
Good news from Social Security--I have been approved for Medicare which will become effective March 2000. Medicare should help cover some of my Mental Health Care. My personal health policy (GEHA) covers only 30 office visits of psychotherapy a year. Since I continue to need 2 visits a week for my recovery, I must pay for it myself.
I continue to go to the Senior Center on M,W and F. I'm doing better with the exercises and I'm getting pretty good at dominos. I am getting stronger but it's inch by inch. I continue to need low doses of Prilosec as I increase the variety of food I eat.
Transitioning into retirement at 57 requires psychological and financial adjustments to say nothing of the physical changes that have occurred. I attended my first NARFE (Nat Assn of Retired Fed Employees) this month. They are another source of support for me as they help me learn to live as a retiree.
Thanks to all my AVM and anuerysm friends at this site who send notes, humor and advice. Our family is really growing!
Update 7 Dec 1999
Christmas is coming and I am flying to Virginia to spend the holidays with my folks and my sister's family. Most of the airlines are good about helping travelers with special needs.
The digestive system continues to be contrary. I am still eating a low fat, low acid diet and taking a low dose of Prilosec. The Prilosec has its own set of side effects such as pain in the stomach, pulling of the muscles in the neck and head, some dizziness. However, Its one of the few medications that I can tolerate.
The hissing in my ears is quieting down....I only notice it at night when I'm lying down. I continue to hear a slurp in my right sinus area when in a reclined position. I'm wondering if this is permanent damage from the air tube used during surgery.
The doctors seem to think the intermittent pain in my head, neck and jaw is surface nerves and muscles. I am now able to massage the muscles over the site of the bone flap. I still have problems with balance when walking very far. It takes me about 10 minutes to get into a sitting position when I wake up in the morning. It feels like the blood in my head has to adjust. If I get up too fast, I start to pass out.
I am still waiting for 6 months of disability back pay from the Office of Personnel Management for the period from Jun 17, 1998 to Jan 2, 1999. The wheels of the government turn very slowly.
I filed a reconsideration appeal with Social Security Administration over the effective date of my disability. SSA determined my effective date was Aug 20, 1998. I believe it was Mar 4, 1998 when I was taken by ambulance from Tinker AFB. Occupational Medicine would not let me return again before surgery because of all my symptoms. I could not return after surgery because of pain, weakness, anxiety and depression.
I filed an appeal with my government health insurance company to review my catastrophic mental health benefits. The result was an additional payment of $1200.
I continue going to the Mayfair Senior Center three mornings a week for gentle exercise and dominos. There are three of us in the active seniors group who have had brain surgery. I continue to attend group therapy/counselling two times a week.
Happy holidays to everyone in our special family and a big thank you to everyone who has touched my life in the past year.
Update 7 Jan 2001
It has been a year since my last update. I am making slow but steady progress. The walls of my world are expanding as I gain more independence. I still have problems with my throat, jaw, stomach, pain and balance. However, they are not as severe as they were.
I have learned that sleeping on my side at night helps keep my jaw from falling ajar and the soft palate from collapsing onto the back of my tongue. Sleeping on my side helps keep saliva in my mouth at night so that my tongue doesn't get stuck to the roof of my mouth.
My dentist, Dr Jim Lloyd, says that my gums are returning to a healthy condition. My front teeth are still shifting. Since surgery, I think I bite my bottom lip when in pain. Which may have something to do with the shifting teeth. The jaw muscle that is giving me so much trouble is located right over the cranial bone flap, plates and screws.
Because of side effects, I seldom take Prilosec for GERD (gastro-esophagus reflux disease). I sleep with the head of my bed elevated with 3-inch bricks under the headboard. I use Milk of Magnesia as needed for constipation a couple times a week. I take no other medication except vitamins. I am maintaining my weight.
It feels as though the food does not process properly from the stomach to the small intestine. I have been scoped and an ultrasound was done but nothing turned up. When I have pain in my stomach (about 60% of the time), I have pain on the right side of my head where the surgery was done. When my stomach and head hurt, I have trouble with my balance. The nerves and muscles on the right side of my head seem to pull my balance out of alignment.
The pain and balance problems are intermittent so I have faith that eventually it will all clear up. It has been a relief to learn that much of my emotional anxiety is due to physical symptoms and not the other way around. Many doctors seem to think that physical symptoms can be explained away by labeling symptoms as mental health problems.
April 2001 will be the 3-year mark since surgery. Dr Andrus, my psychiatrist, says that healing will continue beyond 3 years but it will be slower. I continue to participate in exercise and dominos at the Senior Center several times a week. I continue to see my psychologist once a week and my psychiatrist every 6 months.
I made several trips away from Oklahoma last year. I flew back to Virginia for Thanksgiving with my folks. I even drove a rental car to commute between Maryland and Virginia. I made several car trips to Wichita KS to visit relatives.
My new passion is genealogy. I have researched our family history back to pre-American Revolutionary times. It is exciting to connect with other researchers and distant cousins on the Internet. I am fortunate to have access to the Oklahoma Historical Society Library here in the city.
I am grateful for our AVM/aneurysm family, which gives us the opportunity to share info and give emotional support to one another. Sharing with Dr Bill's "special family" lessens the isolation and fear one feels during diagnosis, treatment and recovery. May 2001 bring blessings and healing to each of you.
Update 2 Jan 2002
Last year there was improvement in my quality of life until after Thanksgiving. I made trips to Wichita every 3 months to visit relatives and do genealogy research. I flew to Virginia to visit my folks in October.
Low doses of Prilosec seemed to control my stomach pretty well. My psychiatrist was pleased that I was able to increase my independence. After I returned from a trip to Lawrence, KS at Thanksgiving, my stomach went out of control.
Everytime I ate anything, I would get a lot of cramping and pain. My gastro-intestinal doctor changed my meds from Prilosec to Protonix for acid and Hyoscyamine for cramping.
Between Thanksgiving and New Years I have spent more and more time on my recliner dealing with the pain, dizziness and cramping. When I increase the meds, I get so dizzy and my muscles get so weak that I can hardly walk.
My relatives in Wichita think I may have gall bladder trouble (which runs in the family). I had an ultra-sound test last spring that didn't turn up any abnormality.
I hope and pray that my stomach condition is treatable. I hope it is not the result of AVM surgery. I have had stomach problems ever since AVM surgery and the problems seem to be getting worse. (I had stomach problems before AVM surgery but they became worse after surgery.)
US Senator Inhoff's office continued to mediate between Medicare and my government insurance policy. It seems like government retirees have a particularly difficult time getting their health benefits.
I wish all of our special family peace, love and improved health in 2002. God bless each one of us.
Update 24 Jan 2002
I went to the ER on Jan 7 with abdominal pain and cramping. I was running a temp of 99 with parched lips, dry mouth and clear discharge from my nose. I was given chest, gall bladder and liver X-rays as well as ultrasound. Everything appeared to be normal.
On Tuesday I had an HIDA test (radio active nuclear test) on my digestive system. Again, everything looked normal. On Wednesday, my Internist said traditional medicine is not working. I am to eliminate wheat (glutin) from my diet, use Prilosec as needed for acid and Kaopectate for cramping and loose stools. The Internists thinks the pain in my abdomen is caused by Irritable Bowel Syndrome.
Food I can tolerate includes rice bread and corn tortillas from the Health Food Store, baked chicken, rice and a few canned veggies. I will see my Internist again on Jan 28. I have an appt with my Neurologist on Feb 4. Needless to say I am losing weight. I continue to be dizzy. When I have pain in my abdomen, I have pain at the site of my AVM surgery.
The Internist does not think that Prilosec is causing the trouble. (Prilosec is about the only acid reducer I can tolerate.....the others give me diarrhea or nauseate me.)
As I stated before, I hope these symptoms are treatable. I hope the doctors can get this figured out before I'm too weak to walk.
Update: 3 Jun 2002
I continue to have stomach problems. I ended up in ER on Thursday, May 30, with dizziness (light-headedness) and stomach pain. They took my blood pressure, X-rays and blood tests. All results were OK. The ER doctor believes there is something in the functionality of my bowels that is causing the light-headedness (to the point that I can hardly walk).
I have been taking Pepcid for the past 3 months. Last Saturday, I took 1/2 tsp of Imodium. On Wednesday, I took 2 tbsp of Milk of Magnesia which worked within 2 hours and kept on working for 24 hours. On Thursday morning, I was in pain and could hardly walk.
My psychologist sent me to ER after my Thursday appointment. The ER doctor suggested I try Tagamet for acid and Metamucil for regularity. A half dose of Metamucil on Saturday acted like a laxative within 2 hours. Needless to say, my driving is limited to short trips to the grocery store. I spend most of the day on my recliner.
My doctors in Dallas have suggested a referral back to Zale Lipshey Hospital for more tests. I keep thinking there must be a doctor in Oklahoma City who can treat my symptoms. My psychologist has suggested a trip to Mayo Clinic; however, its hard enough to figure out how to get to Dallas.
I do have some good news to report. In February my neurologist had an EEG done and the results were normal. I am thankful there is no seizure activity.
Will send an update if there is any change in the situation. Prayers from our family members are appreciated.
Update: 25 Feb 2003
I changed some of my doctors last year after becoming totally frustrated with my lack of progress. I now have a very capable primary care physician, Dr Jeffery Hirsch. Dr Hirsch referred me to a new gastrointestinal specialist and a new neurologist. My new doctors ordered new tests. I had an MRI, neurological tests, upper and lower GI scoping and new medications. The MRI showed no change from the last one, which is good news. I still have acid stomach and esophagus reflux. I have spastic colon/irritable bowel syndrome. My new doctors prescribed low doses of Lexapro for anxiety and stomach, Carafate for stomach acid and Metamucil for spastic colon. (We tried several other meds before we found the ones that worked for me.)
I continue to see my psychologist once a week for my anxiety. I see my psychiatrist every 6 months. My mental health is closely tied to my physical health and visa versa. My overall health seems to be improving ever so slowly. Finding a team of doctors who work together is a big improvement. With Dr Hirsch, I feel like I have found a doctor who can manage my health care. He is a very caring, intelligent professional.
I continue to take care of my 8 year old grandson after school. He keeps life interesting! My genealogy hobby continues to grow. I now have 25 notebooks and have loaded 10 gedcoms on-line. I'm in contact with many distant cousins who are also researching. I'm getting around better but prefer to use stores with shopping carts for balance. I have a handicapped parking tag which is invaluable. I wear a medical alert bracelet which gives me some personal security when I'm out in public.
My folks have been a source of stress this winter. Their health is declining and there have been several incidents requiring special care. Since I don't live in Virginia, my sister and step-brother have had to offer assistance to them. My folks are fiercely protective of their independence. Their life would be so much easier at a retirement center which they refuse to consider.
I applied for Federal Long Term Health Care Insurance in December. It is a 3 year policy contracted by Office of Personnel Management. They denied coverage because of high blood pressure and AVM repair surgery. I have appealed the decision. I do not have and have never had high blood pressure. I am no longer at risk because I had the AVM repair surgery. If I had not had the repair surgery, I would be at risk.
It helps to share information with other AVM patients. We are not alone.
Update: 3 February 2009
It's been over 10 years since my AVM surgery. I never thought I'd be around this long...what a blessing! I was finally approved for Federal Long Term Health Insurance after 10 years of waiting. It's a relief to know I will have care when I am old and need assistance.
I will be 67 in March and have been retired for over 10 years. I am growing cataracts in both eyes. I still do battle with acid stomach reflux and spastic colon for which I take Carafate and milk of magnesia (as needed). Metamucil doesn't work and generic Carafate doesn't work. I still take Lexapro for anxiety. I see my psychologist weekly. My dentist has given me three more crowns and numerous fillings (no gum disease).
On the home front, my pet family has grown. I have my 4 cats and 3 dogs: Diamond cat, Greyboy cat, Handsome cat, Lilly cat, Prissy dog, Kitty dog and Pepper dog. (all were rescued) I get a lot of comfort and companionship from my pets.
Life has been good, even though I'm living in the slow lane. I spend hours on the computer doing genealogy. It's like working a giant jigsaw puzzle trying to get the pieces to fit together. I have time to read. I have time to go thrift store shopping.
I make my trips back to Virginia (by air) to see my relatives once or twice a year. Recently, we lost my Dad's second wife (she reached age 100). Dad is in assisted living. My grandson is 13. I am backup driver for his after school activities.
The big lesson I have learned is to focus on what I can do rather than what I can't do. Many times I surprise myself. I will probably never again be a good dancer, swimmer, scuba diver or 3 mile walker but I can do my own yard work at my own pace. I will probably never again drive halfway across the country but I can make short trips and fly to longer destinations.
I hope that time has been good to all of you and look forward to reading your updates.
Discussion, comments, or questions: Jan LaMotte