1 year post gamma knife surgery

Dear all,

I have not been on the forum for a while but it is really amazing to see how much it has grown during the past year! It was a great source of support and comfort for me when my partner was in the hospital.

I am adding a link of his story for those who are interested in reading in detail/

http://www.avmsurvivors.org/forum/topics/my-partner-s-experience?xg_source=activity

One year has passed since the gamma knife surgery and my partner Juan is now gradually diminishing his anti seizure medicine (Phenytoin) with no notable changes at the moment (fingers crossed).

I don't know about you guys, but for him it has been a real struggle to get a clear answer from his neurologist to see if he should stop the anti seizure medicine or not. Since they want to cover their backs in case of any problem, they stay very vague and leave the responsibility entirely to the patient. Juan was feeling really distressed and anxious about making the right decision. Did any of you have a similar experience?

We are not sure yet if the AVM has been obliterated, he is meeting with his neurosurgeon in September to see if he will get an angio soon or if he will have to wait another year for a complete checkup. The reason is that sometimes it takes over a year for the effect of the gamma knife surgery to be completed and he does not want Juan to feel down if it has not worked yet...

Physically, besides the nerve damage on his left foot which is affecting his daily life a lot, Juan has been well and healthy this year, which is amazing. Psychologically, we had a bit of a roller coaster with a lot of ups and downs...a bit of depression and frustration mainly due to the lack of clarity regarding his change of medicine.

Even if it has been a year, I feel he is still recovering. His strength and energy are almost back to normal but he still gets tired easily because of the numbness in his left foot.

Did some of you suffer from nerve damage while in the hospital? We are not sure what caused it but the nerves on his left foot has to grow back and in the meantime, he suffers from an almost permanent pain and numbness.

I thank you guys in advance for your comments...I'm so happy to be back and share those encouraging news with you.

My warmest wishes,

Fe

Couple of comments.

GK is typically not a quick fix, and I think it's normal to wait 1-2 yrs before doing an angio to check the results.... At least that was the case for us when Chari did proton beam radiation.

She also suffered nerve damage in her right leg during one embolization. Physical therapy helped, but she ended up wearing an ankle brace for 10 yrs. She HATED it! Finally, she had ankle surgery to correct what looked like foot drop. More PT, and finally, she found a personal trainer who knew the body well. Susie took what muscles Chari had in her leg that still worked and strengthened them.

Since she waited so long, her walk has been permanently affected. It's a constant issue for her to try to walk 'normally'. She is doing much much better now, but will never be 100%.

Best wishes,
Ron, KS

Thanks for updating us, Fe. You may wish to join our seizures group (http://www.avmsurvivors.org/group/avm-with-seizures-epilepsy) to ask about weaning off of anti-convulsants. Also, join our UK group to share your hospital recommendation. Best wishes to you and your partner!