My AVM is in the Pons of my brainstem. It ruptured in August. I have some fine motor skill issues and memory issues, but otherwise I am ok. The doctors are exploring the possibility of embolisation using onyx. Right now they are debating if the speed of my blood flow makes me a candidate or not. If they determine not to do embolisation, they feel that gamma ray would be best. They are concerned about using gamma ray in the location of my AVM because it would likely cause some serious issues with swallowing and my facial nerves. Any procedure they choose do is pretty risky since my AVM is connected to a main feeding artery into the rest of my brain. The consensus is that we need to do something, but we don't know what to do yet... I would love to hear from others with treatment experiences like mine.
I too have at pons which is about 2cm. It was discovered to years back when it did bleed. I have asked many doctors overseas and in my country, and they suggest no treatment.
Brainstem AVM are so tough because most surgeons will not touch them. The surgery versus leaving it alone to bleed on its own risks are equally the same. However, it is crucial that you find a doctor that knows about Vascular malformation of the brain, particularly one that has dealt with the brainstem before.
I had one removed from the brainstem by Dr.Robert Spetzler, from the Barrow Neurological Institute in Phoenix, Arizona. 5 of my local Neuro here told me if I had the operation, I had 95% chance of coming out a vegetable. Dr. Spetzler is the best in the world when it comes to touching the brainstem simply because that is ALL he does. You can send him your scans and he will give you his opinion. It is so easy to get his opinion that it seems impossible to be true. I dont know where you live, but he looks at MRI from all over the world.
You can call this number and ask what they need. Even if you dont plan on traveling to him, his opinion is the best you will ever get. 1-800-■■■■■■■■
Ramzi, please read my answer above and consider getting in touch with that surgeon. Mine was in the Pons as well
Dandelion- I just sent my scans there this week! Hoping to hear an answer soon from them. im so glad several people on this site told me about him.
I am so glad you sent him your scans! He is the best in the world for this :) There are several awesome other ones, but he is at the top of the list.
I have also a small cavernous hemangioma in the pons of my brainstem and i send my MRI pictures yesterday to Dr.Spetzler thanxxx to Dandelionwishes for her advice !
Over here they don't want to touch it neither in Belgium that is.
Dr. Spetzler reviewed my scans and says that gamma knife would be my best option for treatment. Won't start radiation until feb or march though. Thanks for the advice again!
It's a year and half later, but I just saw this post. I have an avm about 2.3 in my pons. I'm getting treated by a neurosurgery team at NYU, specifically Dr. Kondziolka, who is the best of the best when it comes to gamma knife treatment. I bled back in February. Initially he was going to leave it alone, but since it bled, he wants to do the treatment. I wish all of you the best of luck. Hopefully one day we'll be living avm free :)
Eric- I ended up having cyber knife treatment through the University of Utah with Dr. Randy Jensen last April. My follow up scan was this March and the AVM is barely even visible on the scans anymore. Crossing my fingers that it will be obliterated by next year’s scan and angio! I am feeling awesome and healthier than I was even before mine bled. I always had headaches growing up and I haven’t had a single one in months. I am sooo glad I went through with the treatment just because it is a huge relief to know it is going away and it gives me hope of being able to safely have kids in the future. I send you my best wishes that your treatment goes well and that your AVM will disappear!
that's such great news, you're an inspiration and hope for us all! That's awesome that youre feeling healthy! How many units of radiation did Randy use?
20 Gy was the dose I believe
It was nice to read these related stories. My AVM is in the pons/brain stem as well. When I was 10 yr old, there was a severe rupture resulting in an emergency surgery & 2 year long recovery. Now at age 27, there has been another minor rupture only bringing numbness to arm & leg with no other symptoms. They will not operate on it unless it is life/death situation due to the location. So they have me on a beta blocker to help slow the bleed. But for now, I need to live with numbness on 1 side of my body. If anyone has advice for me, I’m happy to speak about my situation.