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Established April 15, 1995
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Hi! My name is Marla and by the grace of God, I'm now 28 years old. I married my soul mate, Brian, in June 1998. We live on a small acreage in rural York, Nebraska with our two canine children, Mindy and Tiny Boy. (They are AKC Miniature Pinschers which we hand raised from birth.) Prior to my craniectomy in May 2000, I was a bookkeeper for Country General. I am now a housewife since it is not physically possible for me to work outside of the home and still get the daily chores completed. Brian is a co-owner of Nebraska Grain Systems, Inc. His line of work (commercial grain handling) takes him from home a lot but the times that have counted he has been right here beside me. I thank God for Brian. I thank God for LIFE!!!
17 November 1999
I first learned of my AVM in January of '92. I was 17 years old at the time, was still in high school and had just gotten married - not because I was pregnant or anything, just because I was a very stubborn child and wanted to do what I wanted to do. (My first marriage subsequently ended in divorce.) I went to my general practitioner complaining of severe headaches and dizziness. He put me on antibiotics thinking that I had a sinus infection.
After two weeks of antibiotics, I wasn't experiencing any relief of the symptoms so a CT scan was ordered. Along with discovering that I needed sinus surgery, they found what they called a hemangioma. They sent me to a neurologist in Scottsbluff, NE. (I lived in Alliance, NE at the time.) Dr. Beehler ordered an MRI with contrast. He discovered that I had a left cerebral AVM approximately the size of a quarter, and very near to my brain stem. He didn't want to even attempt doing the surgery on the AVM and referred me to a specialist in San Diego. He also felt that a sinus surgery wasn't to be attempted until the AVM was removed.
Off to San Diego we, my mother, my husband and I, went. We saw Dr. U a very nice man of Asian descent. He explained that we needed to do an embolization and I would be required to stay in the ICU for two days following the procedure. Wonderful we thought, the procedure sounded so simple. We were misinformed.
They took me in to a very large room buzzing with doctors, nurses and med. students. They positioned me on a table with my head in a vise like contraption. Then the IV was started. They made a tiny incision in my femoral artery and began feeding a small catheter through the incision. It was a very strange feeling once the catheter was going through the artery in my neck. All the while, I was able to watch this tiny tube traveling through my arteries. Once they reached the AVM, they started injecting a barbiturate to simulate how I would feel if they immobilized certain areas. The rectangular shaped lights began spinning and voices seemed like they were very far away as I tried to so everything that I was asked to do. The procedure seemed to take forever. They would inject the barbiturate then the artery blocking agent, checking my reaction to the barbiturate before proceeding each time. Then things got scary.
They injected an area that they said was making one side of my face paralyzed and causing deafness in one ear. They told me that if they proceeded, the paralysis and deafness would be permanent. Being a admittedly vain person at that time, I told them to stop. I was wheeled to the ICU and the vomiting started. They took me in for an MRI. Believe me, an MRI isn't the place a person wants to be when they are vomiting uncontrollably! They determined that I was having a normal reaction to the procedure. A few hours later, Dr. U and his fleet of medical students came in and asked, "so when do we schedule the craniotomy?"
"Craniotomy!?", my mother and I said at the same time. "Yes, the embolization was just a prep for the craniotomy." We informed him that no one had mentioned the craniotomy and we were of the impression that the embolization would be all that was needed. They acted rather disgruntled. I went home to the hotel two days later. We went wig shopping on Valentine's day, then and there I decided that I wasn't going through with a craniotomy.
The next day we had an appointment with Dr. U for discussion. Not once did he apologize about not informing us that the embolization wasn't the cure. He told us that I shouldn't have children as the AVM could burst, that there is a 2% per year increase in the chances that the AVM could rupture on it's own and that I should get yearly MRI's. He also said that the craniotomy was our only option as it was too big for radiation and because of its location. I told him that by doing the math, my chances for a bleed wouldn't be 50-50 until I was 36 and I wanted to wait until medical technology could take care of the AVM without a craniotomy.
Here I am, 8 years later. Until now, I had been asymptomatic with the exception of occasional headaches. I AM SCARED! I haven't even had the AVM checked on since I was in San Diego - kind'a the don't know/don't want to know attitude. The other night I woke up with a pounding in my head, then pains that felt like someone was jabbing a hot poker in the back of my head. It lasted for about 5 minutes. My husband was working out of town and all I could do was lay there and hope I wasn't dying. The pain subsided and I fell asleep. I had decided to go ahead and try to have a baby, but I have an infertility problem. The infertility specialist wants me to see a neo-natal specialist before he will help. Guess it's time to look into this area that I have tried to forget that I have.
Update 22 Nov 1999
I have an appointment with my general practitioner today to discuss my AVM. He will more than likely schedule an MRI and we will see where things go from there. The encouragement of the group is largely responsible for my ability to take this small step!
We have also decided to wait until we have this resolved before we continue on the child bearing quest. As I have responded to many of the emails, "What good would it do for us to get pregnant only to have me stroke in delivery? My husband is a very strong man, but it would not be fair to him to have to take care of me and an infant, or worse yet, an infant alone?"
Update 1 Dec 1999
My general practitioner referred me on to a neurosurgeon in Lincoln, NE, whom I met with today. Upon reviewing my "films" from back in '92, he scheduled an MRI, MR/Angiogram and an Angiogram for December 13th. He also informed me that the AVM was approximately 2.5-3 cm in size and not the size of a quarter as I was told in '92. (Pretty big difference if you ask me!) Keep your fingers crossed for me in the hope that it hasn't grown much!
I had decided that if I was going to look into this I was going to go all the way - remove it or bust. But this doctor leans more towards Gamma Knife. I am not real crazy about having radiation beams directed at my head! Besides, it could take two to three years to notice any results and I'd have to get it checked on every 6 months. The doctor said that I might not have a choice! When he said that I instantly put up my guard and thought, "Who do you think you are? This is my body and it is my choice what I'll let you do to it!"
I'll let you know how things go after the 13th!
Update 14 Dec 1999
HI everyone! Well, the angio is over with. They tap danced in my brain for approximately 3 hours. (no wonder why I'm feeling a little rough-headache, stiff neck and dizziness.) Got out of the hospital at 10:30 last night. All in all, I'm O.K. considering...
Not the best news- It has grown. I haven't been given specifics as to the size but I was told that, "it covers an extensive area of the left cerebellum and left tonsil." (the tonsil by the brain stem, not the gland in the neck.) The doctors in Lincoln are sending my information to a doctor in Chicago. (I was given two opitons, go to Chicago or Paris- would love to go to Paris but under different circumstances!) Everyone seemed shocked that I do not have seizures!
It is too big for gamma knife. The Lincoln doctors are thinking that I will have to endure stages of embolizations- then see what we have from there. I got the impression that they feel a sence of urgency at this point. Won't know much more until I talk with the doctor in Lincoln once he has spoken with the people in Chicago. I'm not sure if the reality of the situation has set in, but so far I have been able to keep a positive attitude. Thanks to all for so much support, caring and prayers!
Update 12 Jan 2000
We have just gotten back from Chicago and our first appointment with Dr. Debrun and Dr. Aussman where I learned that my AVM is 4 cm in diameter. The game plan is as follows: On February 4th, I will have my first embolization with a second scheduled for March 3rd. They aren't sure how many I will need after that but their goal is to get it down to approximately 2 cm in size before proceeding with the craniotomy. Dr. Debrun will perform the embolizations in two hour increments and I will be under general anesthesia. (thank goodness!) We are waiting a month between each embolization so that the brain has time to adjust to the changes in blood flow. Before each one I will have to have blood work, an EKG and a chest x-ray. (not sure why he requires this as San Diego didn't, but he is the doctor!) After Dr. Debrun has gotten it down to a "manageable size", Dr. Aussman will take over and do the craniotomy.
Sorry that I didn't update the site with this, but after my December angio I had some problems. The headache, dizziness and stiff neck didn't go away. I was ordered to, "stay down and keep quiet, don't do anything to increase inner cranial pressure and don't do anything to cause physical or emotional stress", so I have not been working since then. The good news is that Dr. Debrun thinks that it is O.K. for me to return to work now. He also says that providing there aren't any complications following each embolization, I can return to work after a one week resting period. He seems to be very optimistic... I only hope that he isn't being too much so!
The funny thing is that I am no longer scared of what is to come! Maybe it is because I know that there are so many of you out there that have been through what I am going through and worse plus I have all of you pulling for me! Thanks So Much!
Update 8 Feb 2000
We are home from Chicago and my first embolization. It appears to have gone very well. Dr. Debrun said that he was able to block 3 of the main feeding arteries of my AVM, though I am not sure how much in "size terms" he was able to shrink it. Following the procedure and my first neuro checks, they had some concern about my right eye not wanting to follow objects past mid line but that straightened itself out in a matter of hours. I have no deficits! I get a little tired and dizzy if I try to be up too much but after a one week resting period, I should be able to resume all activities. My confidence in Dr. Debrun and the team at UIC has grown even more so.
The plan for the second embolization hasn't changed and will be performed on March 3rd but it is still unknown how many total I will have to have. With a little luck things will go just as well as they did with this first one! Thanks once again for everyone's thoughts and prayers!
Update 1 March 2000
After just under two weeks of viral spinal meningitis, I am finally back to feeling "good" again! It seems that the E.R. doctors in Lincoln didn't let Dr. Debrun know that I had meningitis. (I went to the E.R. because I had the same symptoms as a "minor bleed" would cause.) We had to cancel the embolization scheduled for the 3rd.
The pre admission gal called today and was confused when I told her that I wouldn't have the blood tests done until Wednesday because we wanted to make sure that the meningitis was out of my system completely. She said that it wasn't documented anywhere that I had been sick and she needed to talk to Dr. Debrun. She called back and said that we needed to reschedule as Dr. Debrun wants me to be over this for at least two weeks to allow my "system" to recover and for me to regain my strength.
We now go to Chicago on March 15th. It's kind of a pain in the rear as we have to reschedule everything- hotel reservations, jobs that Brian has to do, pre admission tests, ect. But it is better for my body to have this time to recover before we traumatize it further! :)
I also want to take the time to thank all who have sent so many wonderful email my way. You guys are the greatest!!! And especially my buddy Cathy Blais- what would I do without you! (Cathy and I recently had a chance to talk on the phone. It was so nice to hear the voice of someone that I "talk" to so often on the net!) Everyone please take care and God bless!
Update 18 Mar 2000
Hey everyone! We are home from my second embo. in Chicago. Everything is fine and I am actually feeling pretty good. They were able to do two treatments this time. I still need to have one possibly two more embos before we go on to the resection - darn! But again, I am happy to report that I have no deficits! (Didn't even have any immediate post op problems this time!)
The problems were with the pre admission procedures! We got there at 5:30am as instructed. I was told that they didn't have any open rooms so I would have to wait in the waiting room and they would let me know when my room was ready. At about 7:30am, a nurse came to the waiting room and said that they (the surgeons) were just about ready for me. She had me change into the gown in a bathroom. When I had finished changing, another nurse came and put my I.V. port in right there in the waiting room!
We were then shuffled to the operative waiting room. About a half an hour later, my I.V. port sprung a leak from the end of it. I calmly walked over to the only hospital personnel that I could see (she was an ultra sound tech.) and showed her the problem. She acted disinterested in what I was saying until she looked up and saw the blood. A few minutes later, about 4 nurses came running into the room and fixed the problem.
About an hour after the I.V. incident, a doctor came in and said that if I didn't mind they were going to have to do another procedure before mine. He made it sound as if it was an emergency so I told them to go ahead. (I later found out that it wasn't an emergency situation.) All this time, we were still sitting in the waiting room.
Some where around noon, a nurse finally came and got us telling us that my room was now ready. We went up to the room only for another nurse to tell us that she wasn't sure if it was indeed ready or not. I was frustrated to the point of tears! Here I had had the embo scheduled for a month, and they didn't even have a room ready for me.
I basically "went off" on the nurse. I told her that we hadn't gotten much sleep the night before because we had only gotten into Chicago at about 10pm, and sitting on a floor in a waiting room with my head on a chair for almost four hours didn't provide much rest. I also stated that I was hungry and thirsty and they hadn't even started any fluids through my I.V. yet. Her solution was to offer some anti anxiety meds. I almost yelled at her that I didn't need any anti anxiety medication, because if the hospital was more organized I wouldn't be feeling this way! I also told her that if they weren't ready to proceed with my surgery with in an hour, I was going to leave and reschedule because I was tired of the whole ordeal. Not even 30 minutes later, they were wheeling me in to the O.R. Finally!!!
I am sorry to have cast out all of this negatism here! I am sure that almost everyone in the group has experienced similar ordeals. I feel awful about having been so impatient, but on the same token I feel that they knew I was coming in and should have been better prepared - right? I was starting to wonder if someone was trying to tell me to not go through with my embo on that day! Thank God it all worked out! Thanks for listening and we'll keep you posted! The next embo is on April 14th.
Update 17 Apr 2000
Hello once again everyone! GREAT news! When Dr. Debrun did the standard pre-embo angiogram, he found that my AVM is down to the size we were aiming for without having to do further embolizations! We will now proceed to the resection but I will not be able to schedule that until Monday. We were going to meet with Dr. Aussman on Monday, but schedules were packed so our meeting outlining the surgery will have to be a few days before the craniotomy date.
My hubby had a chance to talk with Dr. Debrun following my angiogram and he feels that my outcome from the crani will be good. I may have some problems with dizziness, some right eye problems and some loss of function but we won't know for sure how much of what will be effected until we get there. We are so relieved! It doesn't sound like anything that I can't deal with!!! If all goes well, (which I am positive that it will) I will just have to spend a week in the hospital after the crani. And hey, I am not even worried about them shaving my head anymore. After over 12 years of basically the same long hairstyle, I had my hair cut short- very short in the back a few months ago so that I had time to get use to it. I'll have to send an updated picture!
I also had the opportunity to meet another AVM'er at UIC. Her name is Joan and I think that she is from the Chicago area. She had read my narrative and wanted to meet me because we are having the same procedures done by the same doctors! I was able to visit with her for a half hour or so following her 3rd embolization and my angiogram. She is a very pleasant lady that would be an asset to our group. I will write to her and encourage her to join! Just as she felt that my story helped her, her story might help others. Besides, she can use the extra prayers and support that this wonder group of people has to offer as well!
Not much else for new news to share at this time. I will write another update letting you all know when the crani will be. Thanks again for all of your caring support and prayers! And thanks to the wonderful team of medical professionals at UIC. Even though past "situations" at the hospital have left things to be desired, the medical team has and I am sure will continue to do the best that they can for me!
Update 17 Apr 2000
I have just scheduled the date for my resection surgery. Thursday, May 18th, is the big day. We will have to be in Chicago on the 16th for pre admission testing. Then we will have our "what to expect with brain surgery" meeting with Dr. Aussman on the 17th. I am fortunate enough to have several of my friends and family are going with me to offer their support. Once again, I will have my friend Jackie email the group to keep you all informed. (Thanks Jackie!) Thanks to all for your continued support and prayers. Wish me luck!!!
Update 1 Jun 2000
The surgery went better than we could have ever hoped for! We think that I am now AVM free but won't know for sure until the end of August or beginning of September when I have to go back to UIC for another angiogram.
Four centimeters of my left cerebellum was removed completely from what I understand and I also had an aneurysm as a result of the AVM. Currently, I have left sided weakness and uncoordination. If I try to be "up" too much, I also get double vision in my left eye. (at least everything still works... just a little slower!) They strongly feel that once all of the brain swelling is gone, I will have no deficits! Don't need dilantin or anything!
I don't remember that much about the ordeal, until about day 5 in the Neuro ICU. One thing to keep in mind is that if you get I.V. pain medicines and it makes you too nauseated to keep anything down, request that the medicines be given in a muscle if possible - worked for me! I guess that at times I was quite the "character", arguing with the nurses and such but I really can't remember. Once I was doing that, my hubby, parents and friend Jackie knew that I would be O.K.!
All in all, the entire experience wasn't near what I had imagined! The long drive home was the worst. I would cry at just about every sad or sentimental song that came on the radio - not tears of sadness, tears of joy, relief, thankfulness, etc. I guess that I had to "make up" for the period before the surgery that I wouldn't let myself cry!
Dr. Ausman, Dr. Debrun and their respective teams have to be angels in the flesh - how else could I have gotten such a miracle? Thank to All for the prayers and support as I faced this last hurdle (hopefully) with my AVM. Just in case anyone is curious, my mother asked Dr. Ausman his opinion on where the AVM came from as far as congenital verses genetic. I guess that he feels that they are not congenital but did not respond as far as whether or not he feels that they are genetic.
Love and best wishes to all!
Update 22 Oct 2000
It is so hard to believe that it has almost been an entire year since I found this group. I have met so many wonderful people and made some really great friends. Thanks to everyone!
The real reason for this update is to let everyone know that it is now believed that my AVM ordeal is over with. We went back to Chicago for a post craniectomy angiogram and it confirmed that the AVM was 100% gone!!! Yippee!!! We have been so truly blessed! I will have to write a letter to Dr. Debrun and Dr. Ausman to ask a few questions though. Dr. Debrun only had a chance to talk to Brian for a moment following my angiogram this time. (I was still "knocked out".) We are very curious as to when we can resume the "child bearing quest".
I still have some problems with dizziness and balance but it comes and goes now. (Generally just one or two "Dizzy Days" a week now - which is O.K. considering that I am blonde!) My vision is still a little off. It is hard to explain, not really double vision but more like overlapping vision. Each eye independently still has normal vision but at times my eyes just don't want to cooperate with each other.
Went through a month or so of insomnia a while back and now I seem to have chronic fatigue like symptoms but nothing that I can't handle. I had gotten a temporary handicapped parking permit that I only use minimally now, mainly because I have gotten so sick of people looking at me and even making comments loud enough for me to hear, that it doesn't look like anything is wrong with me. May times I have held my tongue when maybe I shouldn't have. Has anyone else has similar experiences? I guess that I can't really blame society for their thoughts when at times it has seemed like my husband, who is the person who knows me best, has trouble understanding what it is like. Don't get me wrong, my dear hubby has been wonderful through out the ordeal but it's hard for him to tell when I am having a bad day. (If that gives you an idea of just how well I have come through all of this.)
We have decided that I will not be returning to work. Haven't messed with trying to get disability or anything because I really don't think of myself as disabled, even though my doctors would beg to differ when I have my "Dizzy Days". Because of Brian's business, we are doing fine without the extra income. Besides, we are both very old fashioned in our ideals, husband makes all the money and wife takes care things on the homestead. Before surgery it was easy for me to work outside of the home and still get the "chores" done but now it seems to take me longer to get things done - mainly because I get tired and have to rest.
All in all, we are so very pleased with the results of the surgery and would definitely go through it all over again- but only if we had to. (g) We would definitely recommend University of Illinois - Chicago for this type of surgery, mainly for the teams headed by Dr. Debrun and Dr. Ausman. However, if you choose to go there remember that patience is a virtue and it is well worth the waiting time to get such great doctors with such phenomenal success rates!!!
Big thank you's to GOD, all of you ("My AVM family"), my hubby, our family and my doctors and nurses for all your caring support, prayers, etc. My vision and my balance and coordination aren't the same. I worked so hard at first to try and convince other people (and myself) that I was the same following the surgery but I am not. Which causes problems getting those same people to understand what "it" feels like. I did it to myself though. I pushed myself too hard when people were looking then I would retreat to my home and not let anyone see what followed. The retreating part is easy since we live in the country and rarely get unexpected visitors.
My dad has been the hardest person to deal with. He does mean well but will just say things like "you just need to try a little harder" or "you can do it if you put your mind to it". When he says those things I'd like to scream at him that I am trying only now I have learned to accept my limitations - why can't he? Dealing with him is the hardest since he has always been the one person I have most tried to please. (Except for during those terrible teen years!) Before surgery, if he pushed me I pushed myself even harder and his praise was my reward. He still praises me and says that he is proud of how well I have adjusted since surgery but then he'll add in one of the above phrases. Now when he pushes I just want to crumble...
Back in October I wrote an update letting you all know that my post craniectomy angiogram confirmed that I was AVM free. Following that update, I did write a letter to Dr. Ausman and Dr. Debrun with my questions. From the speedy response to that letter I learned the following:
1. "It is uncertain as of this time what
causes AVMs. It does appear to be caused from a genetic aberration
which leads to the development of abnormal blood vessels; however,
we do not yet know what gene is responsible for these
lesions."
2. It is uncertain if my future children will have a higher
likelihood of AVM. An ultrasound of an infants brain done through
their "soft spots" may help early diagnoses. Which in turn means
that it could be treated prior to the infant learning to use the
affected area of the brain resulting in a better outcome for the
child.
3. Since my AVM was completely resected, I should have no
complications in child birth as a result of the surgery.
4. They recommended that we wait one year after the surgery to
continue our "child bearing quest".
5. Most titanium clips used in neurosurgery today are MRI
compatible, mine included.
6. Future MRI are not required but may be useful in AVM studies. 7.
Visual problems should be temporary.
8. My life expectancy should not be compromised as a result of
having had the AVM resected.
9. My brain tissue surrounding the AVM showed some yellowish
discoloration suggesting that the AVM may have had a small leak at
some point.
10. There is no contraindication to the consumption of alcoholic
beverages in my case. However, moderation is the key.
As to what we have done with this information - not a lot! They were just some questions that we came up with. Although it is now safe to start trying to have a child again, it is really the furthest from my mind. At first I was so anxious for May to get here but the closer and closer this date came, the more reluctant I have gotten. Funny how before surgery having children was one of my main priorities and at this time it doesn't seem so important to me. I'm just not sure how I would manage. Time may change things again...
I have not had any further testing done to find out why I am still having the symptoms I have since I had to cancel my insurance. My insurance company was probably just trying to offset the over $200,000 they had to pay for my procedures but I couldn't afford the $100 a month increase in rates as of the first of the year so I canceled it. I am in the process of filing for SSDI. I know I didn't want to but I had to swallow my pride.
There are days that I really regret having had the surgery - those days that I get to thinking about who I was. But then I have to remind myself that at least I am alive to have a future... Thank God! I'd like to say that the constant worry about every headache has gone away but the "what if's" still linger. Is that paranoia or what? :) I know that this update may make it seem like I am a depressed wreck but rest assured that I am NOT! I have just chosen not to candy coat my feelings this time! Most of you will understand I hope.
I'll try to write at least a yearly update from now on just to keep in touch. Take care and God Bless!
Update: 28 May 2002
I can hardly believe that it has been two years since my surgery! Not much has changed - still have problems with balance, coordination, vision, insomnia, fatigue and in busy surroundings but most of the time it is manageable as long as I don't over do it. I've finally settled into my more laid back life style and don't feel as guilty about telling people that I just can't do what they want me to do anymore. I've pretty much forgotten what normal feels like which has helped me to accept my problems better now! Had to give up my Mountain Dew - way too many calories for what little exercising I can handle. (Had gained 20 pounds since the surgery - but have lost it all again thanks to switching to Diet Dew!) Still awaiting my third appeal for SSDI...boy, do they take their time!
Finally got insurance again in January, so I had a MRI done in February. This one was kinda cool! It was done at a brand new facility in Lincoln, NE where they made a CD ROM copy of their findings for me to keep. It is interesting to see, where my left cerebellum was is almost completely black now. I only had 2/3 of it removed in surgery but on film it looks like there isn't anything there at all! Weird!!!!!!! I copied the CD and sent it into the SSDI office which is handling my appeals - hoping that will be all the "proof" that they need!
I am suppose to have another Angio done in August- if I am not pregnant by then! (Yes, we are back to our child bearing quest. Still not sure how I will manage but I do know that if I didn't ever have a child, I would deeply regret it!) My doctor wants to make sure that the symptoms I have are due to the surgery and not something else "brewing" in there. I don't have any new symptoms so I can't help but think that another angiogram is totally unnecessary but on the other hand - what would it hurt, besides my inner thigh! (lol)
Dr. DeBrun retired sometime ago so I am doing all of my follow up with a doctor in Lincoln, NE. I am pretty comfortable with him, after all, when he attended Dr. DeBrun's retirement party, Dr. DeBrun personally handed my "case" over to him! (The doctor I am following up with in Lincoln is not the same one who told me I may not have a choice as to what my treatment plan could've been!)
That's pretty much it at this time. I will update again if/when we get some exciting news.......... Take Care and God Bless!
Update: 20 Feb 2003
I said I would update if/when I got some exciting news, here goes...
After two long years and two denials, today I received notice of my "Fully Favorable Decision" from SSDI! Against the advice of some, I achieved this result without the aide of a lawyer. My case boiled down to the opinion of one medical expert who was asked one question; whether or not medication would help my dizziness. In short, this medical expert determined that due to the nature, severity and duration of my "brain damage" and symptoms, medication would NOT help me Reading his decision was exciting yet depressing. Exciting because it meant I would finally get disability. Depressing because it means that even after I have children there will be no relief of my symptoms with the currently available medications.
Some of you may recall my questions to the family regarding whether or not SSDI could deny my claim since I was trying to have a child and would not take medications, especially since my doctors all felt that taking medications would be futile. Opinions amongst the family varied greatly from "don't give up the fight" to "choose to either have a child or try the medication to satisfy SSDI, you can't have it both ways." Thank you to everyone for their opinions. The positive encouragement helped keep my spirits up and the not so positive made me even more determined to prove my point. Thankfully, my point was proven by a medical expert, whom was hired by SSDI to review my case in its entirety.
I did have my final (knock on wood) angiogram in August. My doctor had to really talk to sell me on the idea. The main reason they wanted one more look was because apparently I moved during my last angiogram and they were unable to clearly see one area. Not only to prevent me from moving but also for my own comfort, I was put under general anesthesia again. When they were done, they even performed that AngioSeal so I didn't have to lay there for 8 hours- just 4!!! There was no trace of the AVM regrowing and no trace of further vascular changes inside my head. On film, everything looked just as it did during my previous angiogram, only they could see the area they wanted to this time.
Still no exciting news on our battle to have children unfortunately. I will be starting injectable fertility medications this month and will keep trying that for no longer than 3 months before moving to IVF. (InVitro Fertilization) Thanks to my good ole biological clock (I'm 29 now!) and more importantly the diagnosis of endometriosis with adhesions during the last year, there is an urgency for us to have a child before my body decides it is totally impossible! With the medications I will be using, there's only a 10% chance of multiple birth. But it's still a good thing both of our families live within a half hour of us - we may end up needing more help that initially thought!
Take good care, everyone! And God Bless!
Update: 07 Jan 2004
Well, this time it's been almost a year since my last update and boy have there been some changes! Brian has had to close his business. To make a long story short, there were "financial discoveries" made in the partnership which resulted in one partner being voted out of office. The debt, asset and income ratios just couldn't recover. At present time Brian is still working on wrapping things up but has no clue what he wants to do in the future.
He and I did follow through with an IVF cycle to try to have a child... it didn't work. It was devastating in more than a few ways. And in the months that followed the attempt I came to some decisions in my life- the main one was not wanting to ever go through anything like that EVER again, even if it meant living child free. Discovered that I wasn't really wanting a child for the right reasons- I was attempting it because kids were part of the marital plan that we had before my surgery and because it was what family, friends, society and most importantly Brian wanted. Flatly decided that my body and spirit have been through enough. Isn't one of the last stages of the healing process acceptance? I'm finally there, have accepted that children weren't in the cards for me, besides living with a disability is hard enough with out tossing an infant in the mix too! However, biological kids are not a dream that Brian has given up on and it's not fair for me to expect him to.
We are currently discussing the big "D" and are uneasily accepting that this is the right thing for each of us separately. It's extremely hard! We've been through so much together only to discover that it isn't working, and there can't be anymore denying it. The experiences in post AVM life have changed us both and is sadly leading us down different paths as it seems to happen so many times when dealing with disabilities. (if that were the only issue, we might have been able to over come it!) I still consider him my soul mate but not by the traditional definition. Someone recently told me that our soul mate isn't necessarily the person we are suppose to spend the rest of our lives with but rather they are the person who teaches us the most about ourselves.
Update: 28 January 2005
Hello once again everyone! It has been over a year now since I updated my information and I feel horrible about that since things have really turned around since last year! I did end up filing for a divorce and moving out last year but was only gone for a little over a month before realizing that it was a mistake. Thankfully, Brian and I worked most of our "issues" out and I moved home in February. So I guess sometimes a persons soulmate is who they are suppose to spend the rest of their lives with!
He started a new business in July of last year... Crane & Grain Service! He does essentially the same things he did in his former business, only this business is solely his! (no more worries about who is doing what with his money behind his back!) It keeps him fairly busy- there are lots of times he's up and on the phone from 7am-10pm but that's what it takes sometimes to get a new thing going! CGS is going very well thus far. I don't mind that he works such long hours, since he is running this business from the house I get to spend more time with him than ever before!
As for me- things are pretty much same ole, same ole. Turned 31 on Monday- my does time fly! Just living and enjoying my laid back life to the best of my abilities. Like spending time with our nieces and nephew. (Two new nieces born this year!) We should be getting satellite internet this next week so that will enable me to keep in better contact with all of you! (I am sorry to have been so neglectful- with Brian being "on call" 24/7, I haven't been able to be online, tying up the phone line much over the last year!) Still battling the endometriosis but no new major medical problems at least which is definitely a good thing! Sooooooooo ready for spring time when it's nice enough to go outside - this Nebraska winter is starting to get old! I'm always ready for the snow until it gets here then I can't wait for it all to melt!
Take Care and God Bless!
Discussion, comments, or questions: Marla Fuehrer
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