i had the gamma knife two years ago, since then i have had one bleed ( three in total ) and the doc’s have told me that coz of where it is ( deep inside the left side of my brain ) that they can only do so much, but i have been told that i will not survive another bleed. I know that i am getting worse with the ringing in my ears, the headaches from hell and my body not doing as it is told, I now have to take amitriptyline for the headaches, if anyone knows of any other treatment can you please let me know.
Definitely contact the top neurosurgeons at the top hospitals that deal with AVMs. Travel if you need to. Different facilities have different capabilities, training, and results. It’s your life, so it’s worth it. Contact the Mayo Clinic, Johns Hopkins, the Cleveland Clinic. Someone can and will help you! I strongly suggest seeing Dr. Rassmussen at the Cleveland Clinic. He’s really amazing and he sees several AVM patients a week. Contact me if you want any info. I hope this helps.
Hi Jerry. I was just reading your posts and if your Gamma was Dec. 08, then that was 1 year ago, right? So what i was wondering is if maybe your symptoms are getting worse because you might have brain swelling??? My son had Gamma and almost exactly a year later, he started having major problems, headaches, focal seizures which eventually became full seizures. He had an MRI which revealed extensive brain swelling on his whole left side of his brain. Could this be happening to you too? Just a thought. We have been told that Gamma on an adult takes 3-4 years to work so you still have time to wait to see how this Gamma treatment worked overall on your AVM. Do not give up hope. I think you should talk to your doctor about all your symptoms and request an MRI. Also if you are on anti-seizure meds, they could be masking other things.