Had an AVM in my cerebellum

Types of Avm's Cerebellum & Brainstem
1

I had an AVM in my cerebellum, after over 10 years of surgeries which hadn't removed it fully I was given the choice of having brain surgery, this was a difficult choice but I went for it.

I had an angiogram afterwards and am pleased to say it has been fully obliterated!!

Good luck everyone else I hope the same can happen for you

2

Hi Survivor. Thank you for taking the time to post this encouraging blog. I am happy for you.

3

That's terrific, Survivor! Thank you for sharing the good news.

4

Congratulations!!!

5

@Survivor1 Could you tell me who your neurosurgeon was? My 9 year old son had an AVM rupture in his cerebellum on December 3rd, 2019. It has been a long 3 months but he has made an astonishing recovery! He is fully walking, talking, and eating on his own. Doctors at first told us that it was operable but they wanted to wait a few months for his brain to heal and settle down, so they had scheduled an angiogram/embolization and surgery for the beginning of February. So in February they did the angiogram and said that they were only able to embolize about 60-70% of it and needed to do another angio/embolization before the surgery, so they scheduled another angio and surgery for last week (beginning of March). He had the angio done on Wednesday of last week and everything went well and they said that they were able to get it about 95-99% embolized. While we were recovering, our neurosurgeon came in and said that he did some research and saw that the mortality/morbidity rate in an AVM resection in the posterior fossa and cerebellum was about 20% which was more than he originally thought, so he started to tell us that he thinks we should now search for a neurosurgeon that has more experience with removing posterior fossa/cerebellum AVM’S and cancelled our surgery that was scheduled for last Thursday… so now we are heartbroken as we thought that this nightmare was finally going to be over and we would be recovering and moving past all of this… :frowning: Can anyone suggest any neurosurgeon in the US that they know of that have successfully removed AVM’S in the cerebellum? We are desperate! Thanks so much!!!