I'm trying to connect with people that have any experience with AVM's in the brain stem.The neuro surgeons I saw didn't offer any thing and offer any advice.
Mine is above my brainstem in the hypothalamus. I had radiation 1 1/2 years ago but its not showing signs of shrinking yet.
I really need to get more familiar with the placement of the areas of the brain.the only area I'm familiar with is the opthalmic artery,which is where i had my first aneurysm clipped 28 yrs ago,and now with having an avm,i also have another aneurysm in the same area as i did before,but it's 2mm and hasn't shown any growth in four years.
Please excuse my ignorance on the topic,but i've just recently gotten the courage to find people who have avm's.Did the the radiation hurt?You said it's not shrinking...it can't grow can it?
I did a search for you…http://www.avmsurvivors.org/main/search/search?q=Brain+stem+
Hi! My AVM leaked and formed a hematoma on my brainstem. I had a posterior fossa superior vermian AVM. It has always been inoperable, for decades, until now. Dr. Neil Martin at UCLA Medical Center in Los Angeles, CA. was able to remove both the hematoma and AVM. In prior years I did have Proton Beam radiation at Mass. General, Boston Mass. Dr. Martin is credited with the AVM grading scale. Best to you, Susan
I had the same experience with the first neurosurgeon I had. FIND ANOTHER ONE :) DO not settle for just one opinion. Find another neurosurgeons that will take time to explain things to do. But most importantly , educate yourself! Dont be afraid to read and search about any question you may have. You can even ask on this forum; a lot of people are very educated on AVM and can answer any questions! I saw 5 neuro before I found the one that saved my life. Dont be afraid to "shop".