Help for recovering

Hello everyone,

I recently saw my neurosurgeon after my third and last gamma knife. The reality of having an avm and epilepsy have been surreal. From reading a lot of your experiences I consider myself lucky. While things are going fine so far maybe because of my age, I do have fear of what could happen later on.

I've seen a lot of doctors over the last couple of years. My avm is at a size and location where embollization and radiation wasn't recommended. The last doctor I saw recommended gamma knife which was never brought up by the other doctors I've seen. I even put it off for certain reasons and ended going back to neurosurgeon asking for the procedure to be done which I regret so much.

I wished I would have found this site earlier on when I was first diagnosed a couple of years ago. My physical symptoms haven't been that bad compared to a lot of you and every case is different, but does anyone out there share this experience? Can I or should I expect anything after 3 gamma knife procedures? The neurosurgeon said that some patients experience seizures after a year after gamma knife.

Thanks for your help.

Hi Sheryl,

I think all person's AVMs and radiation affect them differently. I'd not heard that seizures are a potential a year after GK, but it might be so.

Lots of people are walking around with AVMs that they've had for a long time and have no adverse symptoms, nor do they know they even have them. The real risk, as I'm sure you know, is when they rupture. Some might never rupture, some might.

Radiation treatment is generally low risk during the procedure, although there can be longer term deficits.

My best wishes,

Ron, KS

Hi Ron,

I felt kind of rushed by the neurosurgeon as he had a lot of patients the day I saw him, so I will ask him more about the seizures and the patients he's treated. He seems to be a very good doctor with a lot of experience. As far as I know I haven't had a seizure for a while or at least no one has told me they noticed any.

The other doctors I've seen said many people don't find out they have an avm until they are older. They told me not to worry about it because of my age which is one of the reasons why I decided to put off the gamma knife with the current neurosurgeon. Then again they didn't know about the seizures and I didn't know I was having them. As I've posted my avm is pretty big and I put that into consideration along with aging with this avm when deciding to go for the gamma knife.

Thanks for responding and I wish you and your family best wishes as well.

Sheryl

Ron, KS said:

Hi Sheryl,

I think all person's AVMs and radiation affect them differently. I'd not heard that seizures are a potential a year after GK, but it might be so.

Lots of people are walking around with AVMs that they've had for a long time and have no adverse symptoms, nor do they know they even have them. The real risk, as I'm sure you know, is when they rupture. Some might never rupture, some might.

Radiation treatment is generally low risk during the procedure, although there can be longer term deficits.

My best wishes,

Ron, KS