Hello all. My daughter had her surgery (crainiotomy) on 2/1/13 and it went well. Her AVM was 2.0cm, left-side, toward the back, kind-of over the temporal-parietal "seam". For anyone anxious about an upcoming crainiotomy, I can only say that for a (otherwise) healthy 18-yr old it was no where as scary as I feared. The only surprise was the appearance of seizures.
She has had a few seizures and is now taking Keppra, 2000mg twice a day. She is still healing from the surgery and is finding it hard to accept toned-down physical activity along with her cognitive issues. She just plain old wants to feel NORMAL on some level, and that can't happen for a few months yet. So she is finding it hard to be patient.
About 2 weeks ago she has had (hopefully) her last adjustment to the anti-seizure medication. It was a small one....being no expert, I can only say that it was short in duration and there was no loss of awareness.
We are expecting to return to the neurosurgeon in May for a check-up. Neurologist sometime this month. Justine is really doing well in her self-taught guitar! She has been cleared to do some light jogging, but it will likely be July or early August before she is physically "100%". She is also working hard on her reading and writing. Still a struggle for her. She had hoped to audit a course this summer, but the neurosurgeon said no. The receptive aphasia is probably her biggest problem.
Her spirits are still pretty high. She has found a local brain-trauma group to connect with her age group (18-25). We are hopeful that it will help her to cope with things.
I do wish I had more time to invest in this site. Her mom & I are finding personality changes, and some moodiness. We could only hope to weather the storm she is in with the grace & composure she does! Still, as parents, it is so hard to see your child being held back. We are keeping busy, and that has helped. I guess I hope to stay in touch here, and pick up some tips over the summer. Who knows? I may even be able to help others....now that I know the initial "rush to find out what this AVM thing is", research into brain-bleeds, strokes, seizures, surgery vs. embolization vs. radiation, search for Doctors, etc.
Thanks for listening.