I have had an AVM of my face, neck, throat, and airway since I was born. I have been seein my Dr for about for years now and for the past year he has been treating me with Scholarotheraphy ( Achohol Injections) to kill off some of the AVM and keep my airways clean. While I have been getting these treatments i have been having a lot of Neurological problems, for example I can’t walk up stairs, look at patterns, have severe headaches, can’t hardly carry on a normal conversation with anyone anymore, and have been diagnosed with Severe Narcolepsy. My mental state has greatly deteriated over the past year and it is very hard to deal with.
I had an MRI ran monday because the Dr wanted to see the progress that was bein made. He called me Wednesday and said “I had absolutely no idea how evolved and extensive your AVM has become, it has moved to the base of skull and directly beside your spinal cord we need to start being more aggressive”. After we got off the phone I started wondering if all these treatments have been causing the AVM to get worse or killing it off in one place but its growing back close to my brain and spinal cord and thats what is causing the decline in my mental healthand all the Neurological problems, I never thought they could be connected. I didnt have any of the problems that I have now a year ago and I cant afford for it to get any worse. I think I need a second opinion! Please send me the names/numbers of some good AVM Specialist!
Thank You for your help, Melanie Caulder