I am a 39 year old male, married, with 5 children. I used to be the figure of perfect health. Originally we are from La., but we moved to Texas in 1996. I was injured in Sept. of 1995, on the job,and nearly lost my left leg. I still have problems with it and the pain never goes away. 2 years later, to the day,after my leg injury, I had a seizure and find out about this AVM. I have recently started vocational rehabilitation because my leg injury will no longer allow me to perform my trade as a machinist. Now it appears that I will almost certainly have to interrupt my courses, to have brain surgery performed. Life is not fair. I enjoy gardening,fishing, playing golf,and spending Nascar race weekends camping with our friends at Talladega and Texas Motor Speedway.
I have had this page bookmarked for about 5 months now and have read each and every narrative. I have considered submitting my story many times but did not feel like I qualified. I have not had surgery and I may not elect to. All comments will be appreciated.
I have been diagnosed with a very large and complex AVM, (5CM), on the left front temporal lobe of my brain. I had no idea that I even had the thing until September 9, 1997. I realize now that I have had the symptoms for years but I had always ignored them until then.
I had just returned from a 2 week leave of absence. I was very stressed financially and professionally due to an on the job injury in September of 1995. This particular morning, I was speaking with my boss whom had returned from an out of town job. Several times that morning I had felt the numbness in my right arm and lips. My speech was becoming impaired but I had experienced these symptoms before and they had always passed after a few minutes. I figured I would just keep a low profile until the symptoms passed. THEY DID NOT PASS!! I knew I could not hide it anymore when I was requested to sign a purchase order and the pen would not stay in my hand. I was reluctant to go to the emergency room but I knew that I should. I was certain I was having a heart attack.
When the emergency room physician heard my story and decided that I needed to have my head CT scanned I thought that he was crazy. I was admitted for further MRI testing, and not released for 4 days. The diagnosis was a large AVM in a very bad spot. For 38 years I had no idea.
Since that hospital stay I have been admitted for an angiogram and attempted embolization. During the embolization attempt the surgeons felt that it was too risky and now my case is now being reviewed as a candidate for surgery.
My Physicians are great, nothing has bee rushed, they have been totally honest, and I have the gut wrenching decision of whether to operate or to attempt to live with this thing. It has not bled yet but what are the odds? I feel like I am a living time bomb.
I will update my story as it progresses.
Update 7 May 98
I have learned so much since posting my original narrative. Thanks to all of you who have responded and continue to keep in touch.
For those of you who follow this page regularly, you will notice a physicians name that keeps appearing. For those of you who just happen across this and are searching for a great neurosurgeon, Dr. Robert F. Spetzler is the man. The May issue of readers Digest has an article about him and the Barrow Institute in Phoenix, Arizona. Great story! I read this story and when I showed up for my office visit on May 5, I was on cloud nine. I was getting ready to meet the most highly recognized surgeon in the business.
I did meet Dr. Spetzler and he does not beat around the bush. He has classified my AVM as a grade 4 on a scale of 6, with 6 being the worst possible candidate for surgery. The surgery would be done in a series of operations to reduce trauma to the brain from the increased blood flow. Each surgery carries the same risks. I have a 73% chance of having no neurological deficits. While these numbers are conservative, they scare me to death. Dr. Spetzler speaks to you as if you were a member of his family and he makes recommendations as if you were a member of his family.
So now I have the ultimate decision. Do I approach this from a strictly medical point of view and hope that I do not bleed ? Larger AVMs are not as prone to bleed as small ones. My AVM is at least 5.5cm, possibly more. My memory is fading quickly and I have no patience whatsoever. I hate the Tegratol and the way it makes me feel. Now factor in the human factor, I have insurance now but I can only continue it for another year. Once this insurance is gone this AVM will become a preexisting condition and I will never be covered again. I have access to the best people in the world right now but the odds are still there.
Someone please knock me out, admit me , and wake me up when this is all over. How can one person be forced to decide all of this?