Hi Ella! Was your AVM deep in your cerebellum or more superficial? Did they remove it right away during the bleed or did you recover and then have it removed later? My 9 year old son has an AVM in his right side cerebellum (that ruptured back in December 2019) that sits right next to his brain stem. He has had 2 embolizations done and it is 95-99% symbolized and doctors are giving us the best option as GK and we would really like to hear others success stories of surgical removal. Thanks so much!
Hi Cera,
My AVM ruptured in November 2017, and because my brain was swelling and compressing my brain stem, I had an emergency craniectomy (where they removed a piece of my skull) that night. My AVM was not diagnosed till ten days after my bleed, because of all the blood they could not see clearly enough to diagnose it or remove it. So I didn’t have surgery to remove it until February 2018. I believe my AVM was almost exactly in the middle of my cerebellum. From my understanding my surgeon was able to go in between my cerebellum and occipital lobe before actually cutting into my cerebellum during my surgery.
I had just been discharged as an inpatient from rehab a week before I had surgery. The rehab doctors told me that I would need to come back as an inpatient after my surgery, because they expected I would have setbacks in terms of my recovery. However, the surgery went really well, and I didn’t have any new setbacks (aside from really bad headaches and fatigue).
I know every AVM is different regarding risks with associated with treatments, but I was told that the chance of a AVM bleeding again is much more likely than an unruptured AVM bleeding to begin with, so that is why I chose to have the surgery over radiation.
I was told that children/teenagers have a chance that their AVMs can regrow again. So I had a follow-up angiogram a year after my surgery, and it revealed that my AVM did come back. However, it is unclear if my AVM actually regrew, or if it just did not show on the angiogram I had right after my surgery. (I hope this makes sense). Regardless, I don’t regret having the surgery.
If you have any other questions feel free to ask.I understand how hard these decisions can be (as I am in a similar situation again). I hope your son is doing well and getting better.
Take care of yourself,
Ella