My 3 year Gamma Knife anniversary is 5 days away, and the MRI and CT Scan to determine if I need a second round is a few weeks away. I know I should cross that bridge when I come to it but...wow. I really don't think I can do it again. I've carried on about you have to deal with what you're dealt, blah, blah, blah. But OMG I'm tired. I have permanent damage and they can't say if it was caused from the AVM or the GK. I was diagnosed with gastroparesis a year ago with no GI reason found, so I'm waiting to see if the vagus nerve in my brain stem shows damage. The closer it gets, the less I sleep. I thought I would eventually be okay again. My brain has gotten so much better every year since the GK, but not without constant effort and pushing it to exhaustion i.e. it can't formulate a sentence anymore or I start to stutter. Then I have to rest. But I don't really have a choice on the pushing because EVERYONE in my life acts like all I had done was have my tonsils removed or something. I think I'm just realizing that my brain is not coming back to it's pre AVM condition. I'm so tired of everything being so hard.
It's nice to come back here where I can talk about it. Thanks for listening survivors.
Elizabeth..We thankfully have this Network as we understand, even though others in our lives just don't know what it's like. I didn't have GK, however, there are so many people on the Network that have had that treatment. They will read what you wrote and feel for you. Hang in there..we are here for you!
Elizabeth,
Yes, you're tired. You've been through a lot. Sleep, or at least try to. Yes, it's frustrating. Yes, people treat you like it's no big deal (I think it's their way of dealing with it). There was an awesome letter posted by Louisa on here from your brain's perspective about listening to your body and being nice to yourself. http://www.avmsurvivors.org/profiles/blogs/a-letter-from-your-brain You probably already read it. But print it out and tape it up somewhere. Not only will it remind you to be nice to yourself, but it’ll inform others as well. Hope it helps somewhat.
The letter has some great advice. This AVM thing is a life changing experience but it doesn’t have to be all bad. It’s all in how you are able to perceive it. But I understand frustration and the need to vent once in awhile. Feel free. That’s what we are here for. Hope you feel better. :)
Good call on the letter Suzy, it's great! Elizabeth we all can relate to how you're feeling. I didn't have GK either, only a craniotomy after the bleed :). Sometimes tired doesn't even begin to describe it. We all just need to look like hell on the outside so that others could understand, don't you think?
Hi Elizabeth
I had GK too. About 2 1/2 years after getting it, I started to have uncontrollable siezures, involuntary muscle movements/tremors and cervical dystonia. I am now disabled because of this. Every doctor I saw, 9 of them in total, said it was either from the GK or the AVM. They don't know which one is causing my propblems. The surgeons wanted to do another GK on me and I refused. I do not want to take the chance of more brain damage. Although life has gotten to be more challenging for me.... I do know, It could be worst (wink)
Ben
One other thing. I use to get real frustrated and often depresed when I couldn't do something or I would have a siezure or my legs and arms would tremble. Once I came to accept that this is how my body is now, that this is how my life is. Then I learned not to fight against it any more. I had to learn to "accept it". Now is what I do - when my body tells me to stop and rest, I do it. When I have a siezure or I get a migrain. I'm usually bed stricken for a couple of days. Then I'm good again. I've accepted that this is my life now. And believe it or not - I don't feel stressed form it any more. Oh... I get my days, don't get me wrong but, over all - my life has become more simple from just accepting it and listening to my body. Or should I say "my head/avm" LOL I do what I can, when I can do it. And, if I can't do something at that time, then I'll do it another day. That works for me. I wanted to share this with you. I hope it helps :)
Ben
Beautiful comments, advice and support. All of you made me laugh and smile, felt good!! Thank you, thank you, thank you :))))