Well today I had my Neurologist appointment and he and the Neurosurgeon have decided my avm is too small and too deep in the cerebellum to do anything other than watch and wait at this time Its frustrating, but at the same time I understand, I have not had a bleed. its not causing my seizures or headaches, so why risk a dangerous procedure when they dont have to? They are going to monitor me closely and work on the seizures and headaches instead. Actually it might be causing my headaches the neuro said, but he is pretty sure he can get them under control. So he switched my seizure meds and upped my clonopin which has been helping my tremors so I think it will help my seizures. So now I just want to get rid of these seizures so I can get my life back. I’m gonna try not to worry about the avm, and most days I probably wont, but I am going to keep it always on my mind as far as staying on the doctors and following up, especially if I notice any new symptoms. And of course, every bad headache is going to send me to the ER…
Not sure if that’s good news, bad news, or just news… On one hand, you don’t have to go through any procedures in the imediate future - on the other, the frustration of having to watch and wait… I just don’t know to feel about that. At least there’s a promise to watch you closely, and you seem to be connected to the right people should the status quo change… so I guess that’s a good thing too.
I would feel frustrated also but at least you have an answer. I think It’s great that you will be under some ones watch now…may be with time they can develop way to get to your AVM until then,hang in their!
Sending Angel light and love…d
I pretty much feel the same as the rest of you…glad that Jo now has some kind of answer and someone watching over her. But it still sucks that you have to play the wait and see game like me, Jo!
Jo it’s a mixed bag good and bad. must be frustrating to be monitored but at least they are monitoring you, and they gonna get other things under control for you so thats good. Just hope it helps and you start to fel better. Ax
Hi Jo, being a small avm is good news. Do you know the size of it? Maybe one embolization can solve the problem. A second opinion would be nice too. Take care. xx