Hi
I’m not sure why I didn’t post here earlier.
Our daughter just underwent gamma knife at barrows.
She been complaining about further weakness on her left side and pain at the pin sites.
I know it’s to be expected, but her dr recommended taking steroids to reduce any potential edema.
I’m so nervous.
I’ve heard/read unpleasant things about them.
I
This whole situation is so overwhelming.
It’s not like when she had a craniotomy and we were told it was obliterated. Now we have to sit and wait.
On top of that, we were told it’s quite large and she’s going to need 4 rounds of gamma knife!
Has anyone else had so many treatments?
Before we met with the drs we thought it would be one or two.
Anyway, I just wanted to say hi to the other gamma knife patients.
Btw she’s just about 15 and was born with the AVM.
It was found prenatally. And I was rushed in for an emergency c/s.
She had a craniotomy at 4 mos.
When she was 6 we found out that it had returned.
And here we are today.
Shalom G, I had 2 craniotomies for my AVM at 14, seizures/meds ever since. So I can relate to the experience of having all this come down as a teenager. I don’t know about the gamma knife personally but I read great things here.
Try to literally take it one day at a time. And if that is too much sometimes you might have to take an hour long walk. Phoenix is a wonderful place to hike this time of year.
The good thing about having the procedures done at an early age is that the body recovers quickly and completely. Also, believe it or not, Gayil will probably remember much more of the love she’s receiving than the pain.
Emotionally you’ll all need patience because of the fear and pain during this ordeal. But I have a feeling all will be b’seder. with feeling, Greg
I was given the steroids to prevent edema after gamma knife. I was also prescribed an anti seizure drug phenytoin. All I could do was lie still and breathe for the week of steroids. It was rough and I am sorry anyone else has to go through it. But I was very happy and felt better once the week of steroids ran its course.