Well, after a LOG wait, we got feedback from Dr. Spetzer at Barrow Institute. Due to th size (grade IV) and location (near brain stem) of my husband’s AVM, surgery is NOT recommended. They suggest he be treated “clinically”. Is anyone else in this situation? What do we do next?
I just had my appt with the neurosurgeon this past Thursday, and both DR’s told me that they did not advise surgery. My situation is the same with the location…too deep into the cerebellum and they would have to cut too deeply into the brain mass of the cerebellum to get to it. Complications outweight the benefits. My next step is to go to a regular Neurologist to address the symptoms of the bleed. I’m still waiting on an appt with them, and have no clue what to expect. In the meantime, I’m on Lyrica to address the pain on my left side. I will keep you guys in my prayers.
I had the same prognosis as you and "here4u2. My avm is deep in my left cerebellum and surgery was not an option (discussed this with 2 neuro’s). My option was SRS (stereotactic radio surgery). I had 6 rounds of radiation treatments over the course of two weeks in July 2010. About three months ago I also had an emergency embolization because after the radiation I had a number of additional bleeds. That would be my definition of “clinical” treatment. Make sure you discuss the options with your husband’s neuro team and of course don’t be afraid to ask about the risks. While my AVM is deep in the cerebellum and your husband’s is near the brain stem, I wish you the best and wish a positive outcome for your husband. If you ever have any questions for me feel free to drop me a line. Best to you both and many blessings. Prayer is a powerful thing and has gotten me through to this moment.
How did you feel after the stereotactic radio surgery? Did this help ease your symptoms? Did you start having additional bleeds immediately after the radiation treatments, spread over time, or recently? Sorry for the 1000 questions, but I am desperate to find a treatment to get me back to normal.
After and during the radiation I was extremely tired. I felt like I wanted to sleep a ton and I didn’t really have an appetite. The other thing I experienced was that I was really really thirsty and nauseus. I had a few bald spots but they were each about the size of a quarter and in the middle of my head so they weren’t very visible… and hey for us this is nothing right?
My first small bleed after the radiation was in December 2010, then January 2011 and then when it happened again in May/June 2011 is when they decided to do the embo. I have problems with short term memory now…meaning I basically have none and i still experience the headaches and neck and back pain. I’m not allowed to work, or drive, or live alone but I’m truly blessed in all ways. Please ask me as many questions as you like…that’s what I’m here for. When I first joined this site, the people were amazing and I was scared and confused as well so I look for opportunities to give back.
Hi Robin yes My hubby is in the same boat. No one will touch his AVM as it is too large (grade V) and is very complicated. My hubby has been very closely monitored and we have been through a pretty tough time with reactions with different meds but I think things are settling down now as he hasnt had any seizures for the last few months and is practically back to normal. All I can say is that if you have any doubts about anything make sure you are heard. To have a good Dr on your side is everything.