My mother has a very large AVM in the frontal lobe. When she was 6 years old she became ill and could not raise her head without vomiting. At the time, back in 1938, they thought she had had a head injury and she was in the hospital for a month, they performed some sort of surgery and removed what she says was "some blood" - of course now it is pretty sure that it was the AVM. She had no symptoms for the next 50 years!
She is now 67 years old - the AVM was discovered 10 years ago when she had a routine eye exam. The AVM was pushing on her optic nerve, causing vision problems. For the last ten years she has just been coping with slowly decreasing vision. The doctors all said her AVM was too large and in too difficult an area to risk surgery.
In June of this year she became ill again - unable to stop vomiting, and with a headache. We took her to the hospital where we were blown off, they said she had a virus! They gave her fluids for dehydration and sent her home. Two days later her right eye was very puffy and droopy and her vision was very bad. Took her back to the doctor (really a physician's assistant) who gave her some Benadryl and said she had the flu! At both doctor visits we expressed our concern about the AVM bleeding but they said she would have a much worse headache.
Later we took her to her eye doctor for a previously scheduled appointment, and he ran tests finally and determined that her AVM had indeed bled and there was a large clot still sitting there. She was put on steroids in the beginning of July and she improved quite a lot. She had been having a lot of fatigue and had no appetite at all, and the vision problems were much worse. The steroids really seemed to be helping. Then about 3 weeks ago her eye again became very swollen and she began having fatigue and confusion again.
She has been put back on steroids and they redid a CT scan but say she has had no new bleeding. She is having a lot of right-side paralysis and also a lot of fatigue and general weakness. She really seems to be be fading away this time. Last time she improved but so far we are not seeing that improvement. It is very scary and the doctors can't do anything about it.
My mom is getting depressed, she was a very active person and now she just literally can't get up off the couch. I'm sorry to make this so long. I know all of you know what it is like to go through all of this.
Update 11 Oct 1999
Unfortunately my update is the final chapter. My beloved mother died Saturday October 9th at 5:30 a.m. She died instantly at home. We will all miss her tremendously. She fought very hard and her spirit was always good. She was an amazing and giving person and full of love. She was a bright and shining star.
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