I received mixed recommendations and would love to hear if anyone else has an AVM in the same area, and the diff suggestions you’ve gotten.
Hi Eric!
My AVM is too close to my brain stem to surgically remove it safely. So I have been treating with embolizations. My Deformity is in my Vein of Galen (above my brain stem). The deformity cannot be removed but we can treat the AVM which is on the left/back side of my head. I have had 3 embolizations so far. I am scheduled for at least 3 more. It all depends on if the feeders peel or if the AVM recruits any more feeders. I have a great team of doctors whom I trust completley. My Drs are treating the patient and not jsut treating the AVM which means a lot to me. I am not sure where you are located but I recommend finding a doctor that you are comfortable with and trust in treating you. Even if it takes some time looking. I saw a few specialist before starting treatment. Have they said the size of your AVM? Have you had an angiogram yet?
Hi Rebecca! Thanks for responding. Mine is 1.5cm in the pons area of my brainstem. I have gotten an angiogram and most of my doctors tell me to do nothing. I just met a doctor that told me there is an 80-90% chance that they could zap it with the gamma knife. He tells me that the acute risk to me is close to zero…but the radiation could cause brain cancer in 10-15 years from now…
Rebecca Vanderlinde said:
Hi Eric!
My AVM is too close to my brain stem to surgically remove it safely. So I have been treating with embolizations. My Deformity is in my Vein of Galen (above my brain stem). The deformity cannot be removed but we can treat the AVM which is on the left/back side of my head. I have had 3 embolizations so far. I am scheduled for at least 3 more. It all depends on if the feeders peel or if the AVM recruits any more feeders. I have a great team of doctors whom I trust completley. My Drs are treating the patient and not jsut treating the AVM which means a lot to me. I am not sure where you are located but I recommend finding a doctor that you are comfortable with and trust in treating you. Even if it takes some time looking. I saw a few specialist before starting treatment. Have they said the size of your AVM? Have you had an angiogram yet?
My AVM was in my cerebellum very near to my brain stem, in an eloquent area (I thought that was a good thing, but now I’m not really sure). Mine presented as a bad headache and they were able to take it out after embolization and I’m still alive and functioning. It’s only been about 4 months. But I’m not sure what kind of information you might be looking for though, so good luck! If you have any questions, just ask!!
Hi Eric,
I had a 1 cm cavernous malformation (in same 'family' of vascular malformations as the AVM) in my right thalamus surgically removed 3/9/10 @ Stanford Univ.
With your AVM in such an eloquent location, I'd especially encourage you to go to someone highly qualified and experienced in treating AVM's. On the east coast I know Dr. Chris Olgilvy In Boston, MA and Dr. Daniele Rigamonti @ Johns Hopkins have good reputations, but keep asking around.
Happy New Year to you & yours!
Patti
Hi Eric,
I also have an AVM in my brainstem, in the mid-pons, actually right at the root entry to the trigeminal nerve- so it causes substantial pain (trigeminal neuralgia-shooting sharp pains down the side of my face/head). I have been told that surgery is not an option and that even embolization or radiation to that area is too risky- he said one fraction of a mm change in gamma knife to that area would leave me "a different person". Mine is about the same size as yours as well. Right now we are watching and waiting and doing MRIs, etc to monitor stability... I am trying to see a neuroendovascular surgeon at a different hospital for another opinion. He specializes in AVMs, so I am hoping he has some other options.
I would love to hear more about your experience.
Patti
Hello all AVM friends LOl,
I have been dealing with my cerebral AVM on the left temporal Lobe since 2005, 2 months after I got married. I had a embolization done that year and it started healing the AVM. In 2007 I had Gamma Knife surgery and my AVM went from 15mm golf ball size in 05 to 3mm in 2010. So it been shrinking down slowly after a 6 year period. I did have some speech problems while the scar tisssue of the AVM begins to heal but i haven't had any real problems since Feb 2010. I now am planning on a family but I'm scared because I know I'm at a high risk of swelling or the worse case Bleeding in the AVM. But my doctor's, Stanley Kim and Dr Stephan Brown Austin Tx, say that there is a 15 to 20% chance that anything would happen. So I'm not sure what to do because i'm scared of the consequences. Are there any ladies out their that have had a success pregnancy after AVM surgery? I do recommend Gamma Knife surgery if it is available for you.. I wish all of you the best of luck in finding a good Doctor that can help you. But in my personal opinion The best medicine I believe and that has healed me is to give it to God because he is the best healer :)
Please feel free to talk with me about your experiences about your AVMs after all we are like a small family LOL ☺
Sincerly,
RoxAnne P☺