I have searched for a long time, and have never found another person who has had an arterial venous malformation and bleed of brain, brain surgery, or the resulting homonymous hemianopsia, a vision disability, at a young age, and are now in their 40s or 50s. I am 58. Could I be the only person like me? One doctor said I could be.
You are not the only person with an AVM. I had symptoms in 1997 and my GP referred me to a neurologist. I had an EEG, an MRI, and I had an angioplasty and a special blood test. My neuro Dr. told me I was born with it. He sent me to the New England General Hospital in Boston. On April 15, 1998 Dr. Shukart and his team operated on me for 13 hours. I had a brain bleed and a stroke while I was under and it was touch and go. I came through that but four years later I was diagnosed with another neurological disease called OPCA which stands for olivopuntolcerebelleratrophy (sp?) The neuro claims I was in the begining of OPCA when I had the operation for the AVM. Here I am 10 years later. I am in a wheelchair and I live alone (my husband died 5 years ago) and I have someone that does my laundry, cleaning and errands plus good family support. I can cook, bathe myself and function nicely. I have a lot of faith and believe that everything happens for a reason. I turned 59 in June and I consider every birthday a blessing. Good luck to you and please keep me posted. I would like to hear more from you and how you are doing.
Mimi
Finally someone answered me. Thanks. I was asking if I was the only one who had the surgery for AVM before 1960. I wonder sometimes if anyone else is alive like I am. I do not know what OPCA is. Can you tell me? I was born with the AVM. I believe most AVMs are an anomaly of birth whatever that means. Mine bled previous to the surgery, so I lost extra brain cells, and in 1959 there were no scans. The tests were horrifying at times. They found an "area of irritation" from an EEG. They explored and got to the AVM. Thinking it was cancer, they took out too much brain. I am glad to be here still.
I live in FL am a widow and have one son Joe, who is 27. He lives in Richmond VA. He's a mining engineer. I miss him. I did not want to live in Richmond when I sold my home in Delaware this past January. I had him in mind, not wanting to be a pain (I do not drive), along with the weaher there is still hot and gets cold, too. Done with cold. Where do you live.
Best wishes
beans
You are not the only one out there. I have had my (A.V.M.) since birth. I have been shot three times with radiation and still it is in there. In my deep brain. ahhhhwwwwweeeeeelllllllll...... What can we do about this information. Well not really a thing but get better. There is a sight that has helped me about this terrible illness. It is avmurvivors.org. Go and check it out. It could be very helpful.
eeehhhh!!!!
Sincerely,
Troy Garcia
Hi Tony:
Thanks for writing, Whst I meant by being the only one is that I am almost 60, and still alive after a craniotomy in 1959. I am aware that people my age do have AVMs and treatment. I wanted to know another person who lived for 40-50 years with the after effects of, and sometimes fear of a recurrence, But, I'd like to talk to you. anyway. Maybe I have some knowledge or experience I can let you know about. Thanks. Oh, I am on the AVM Survivors support group, too.
beans
Add to the discussion