Would be interested who had an (un)successfull craniotoma and needed to have a nother treatment afterwards. Why? Where was the location of ur AVM? Size of ur AVM (before/ after)? What sort of treatment did u get afterwards and how were the outcomes from crani and second treatment...???!! I know thats a lot of questions.....
I am sorry you have had recurrence, Manux. Those with extremity AVMs learn to expect recurrence, and even with brain AVMs, it is more common than doctors realize. If you type "recurrence" or "grew back" or "unsuccessful" in the search box, you will find many stories. Younger people tend to experience more recurrence than older ones. You still have a good chance for success with subsequent treatment; it's just emotionally very difficult. If you had a craniotomy, the reason for recurrence was probably an incomplete removal of the AVM; the residual AVM can recruit new blood vessels, which allow regrowth.
I had a size 6 AVM at the thelamas. It was treated
by a 2 gamma knife treatments( wasn’t cut
open ). I have never experienced any problems,
not on any meds, graduated on time(you
wont believe what i had to do), went from under
A 1.0 before Injury to a 4.0/3.5. My parents were
Told I would never walk, talk again, basically
I defied all that I was supposed to be. I don’t
think it was luck, I think it’s because I have
something special to do. After being in a coma
4 a month, at a rehab unit for a month I was
able to walk :). The feeling between both
sides is almost the same. My story is rely
inspiring to people that hear it. I’m so sorry
u experienced it also. I hope u have a wonderful
recovery and please let me know how it’s going.
If I don’t reply ASAP know I will get back.
Manux,
My daughter has required three craniotomies – the first one was an emergency when her left temporal AVM ruptured. A year later came #2 because To remove pieces of the original one. Last summer, came #3 when another neurosurgeon found more pieces. All three times, we were told the AVM was gone and would never present another problem. Now I just take those comments with the best of intentions.
I am told my daughter will have to be followed until she’s in her mid-20s in case the AVM regrows.
Yes it feels like we live our lives on a cliff, but we do our best to relax as long as neurological signs don’t change.