Hi , I have an AVM in my pons area that bled back in February. I got the gamma knife procedure done last week. Does anyone have any positive stories about the gamma knife? I'm 35 and terrified of the AVM bleeding again.
There are many sub-groups on this site. Try this link. http://www.avmsurvivors.org/group/brainstem-avm-cavernous-malformation. Best wishes!
I haven't had the gamma knife but I'd like to respond to your statement about being terrified of another bleed.
My AVM is within the cervical spinal cord and not operable. I was finally diagnosed in 1989 after a few years of emergency room visits where they'd do a CT scan of my brain and find nothing, er, at least find nothing wrong. :-)
I think being terrified is a normal, healthy response to our experience. If, after experiencing what we have, someone were to be cavalier I'd have to question their sanity.
Try not to let it overwhelm you. I admit, I've failed at that often over these 27 years and have been terrified to the point of total inactivity. I'm sorry, I have no quick fixes, only that to try and harness that fear into something good or productive. By all means, do your best to not let your AVM rule your life. I have missed out on a lot of life for fear that certain activities might cause me another bleed.
As I write this to you, I'm just now recovering from another episode of vasovagal syncope. I lost consciousness and spent just about two hours on my kitchen floor. My spinal cord isn't able to handle the signals from my vasovagal nerve appropriately. It seems to happen every time my bowels try to work. It's a story best not described.
I'll keep you in my thoughts and pray for you to be loosed from your fear. For me, keeping my thoughts on Christ and His word helps me to not be afraid. After all, I know where I'm going when my time comes. I will confess, it's not death that scares me, it's the pain and the paralysis. Even so, He is there in that too, if I allow Him and not the fear to occupy my thoughts.
God Bless you,
Hi I had gamma knife in September 2013 it took 2 years and my AVM is gone!!! That’s the great news. I do have head pain. I don’t like to say headaches because that makes people think something different then it is. It’s hard to explain how it really feels. I get a lot of pain when I bend my head down and go side to side. They believe it’s some kind of radiation necoris but there is nothing showing up in my scabs. There was a small ring around the AVM when it was there but they put me on steroids and that didn’t help the head pain the ring is gone. There seems to a little scar tissue but nothing major they say. My right eye gets a lot of pain now not sure if they hit a nerve when they attached the head frame. I am still trying to figure out why I have these issues. I hope they lessen over time. I’m going on 3 years. At lest the reason I did the gamma knife was to get rid of the AVM and it’s gone.
I wish you all the best!!!
I meant to say scans not scabs
Niyani, that is great to hear! I hope I can post the same in years to come!
I had a gama knife two month ago i hope it will desapear,i have a control magnet in november…