I was diagnosed with an AVM adjacent to my occipital lobe in 2009 in my early 20s. I had gamma knife shortly afterwards. Since then I’ve only had two seizures. I recently got the results back from my angiography and at a meeting with my neurologist he announced - you’re cured!! At first I couldn’t understand how I could be cured because I still get visual disturbance and in fact had a seizure a few weeks ago. He explained that the scar tissue may be causing electrical imbalance and that may lead to seizure.
I wanted to ask the community - will I now need to take anti convulsants for the rest of my life? Can scar tissue ever heal? Has anyone else here had their AVM completely removed/obliterated and is now dealing with the effects of scar tissue? Any information would be greatly appreciated!
I think that your own doctor can answer this question better
than we can. I had my AVM removed with surgery in 2002,
and cerebral scar tissue problems were very possible for me,
but they did not materialize. I hope that any problems
you have will lessen with time, until they are totally gone.
Hi. I hD AN AVM bleed and a craniotomy when I was 8 years old. This was in 1959. Yes, I am now 66. Yes, there were AVM’s then, but it was not known at the time what they were operating to find. It was found in the right occipital lobe, and affected my vision severely. I have homonymous hemianopia, or center to left of my visual field is gone in both eyes. It never got any better or any worse. I don’t drive, and now have a guide dog. I have no problem with any scars, but I never look for them or the burr hole indent. So, yes 57 years later, I am still visually impaired with all the baggage from that. I never went to college. I became a legal secretary, and eventually a paralegal at the Attorney General’s office in the State where I lived then. I was married and have two grown boys, but my husband died 20 years ago, when he was 47. That was the worst thing to ever happen in my life. I was dependent on him. Since then, I have come back as me and happy again. It just took me too long to get over being alone. You will get better as time passes. I still take seizure meds, have most of the time, for all these years.
Just don’t try to be the same you who you were before the AVM. You can’t be the same, but sometimes you can be even better. It made me try harder to succeed, be aware of other people and their own problems, and to not complain to everyone. They can get sick of it. I had/have a few good friends who understood me and why I do what I do. They are fine with talking about it.
John, thanks for your help and I’m happy to hear you had no symptoms!
Beansy, your story is fascinating and thank you for the advice. I can relate to your last paragraph. My life has already changed (I was diagnosed seven years ago) and I’ve become successful in my personal and professional life. I just adapted. The AVM had no symptoms but anxiety (over a seizure occurring) because I get visual warning signs. This has been somewhat traumatic.