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