My son is 15 years old. He had his first rupture on 4/10/2020 which is how we discovered the Spetzler-Martin grade 4 AVM in his parietal / occipital lobe. He is very lucky because he bled into a ventricle and has since recovered in full. The problem we are facing is what to do now. All of the doctors agree doing nothing is a very bad idea. Unfortunately, that is where their agreement ends. The 3 main options we have been told:
- Remove-- Risk blindness, speech and motor function issues which are a real possibility. We have been quoted up to 50% chance. (I hate to put my “normal” child to sleep for surgery knowing that he may have so many problems when he wakes up.)
- Gamma Knife in 3 sections wait and then likely remove. We have been quoted as low as 25% chance this will work and as high as a 75% chance this will work. I have been told the risk of side effects are 1% but then other doctors have told us that there is a high chance of necrosis of the surrounding tissue which can lead to the same problems as above. We have also been told brain tumors may develop in the future as a result from this treatment because the AVM is so large and will require a lot of radiation to successfully shrink. I would VERY much like to know about others who have tried GK and how it has gone…particularly where you went for treatment, size of AVM, and side effects experienced. Are you happy with your GK?
- Embolization then Radiation then removal – This super confuses me as some doctors say you can’t do Embolization then GK where as others have said because he has such a large AVM you really need to do Embolization first.
I have photos of the angiogram, MRI, CT-A, etc, and all the doctors we have talked to on his group FB site “A Cure For Kyler” if this helps.
My husband and I are just trying to get as much information as possible to make the best decision. We know our son has this ticking time bomb in his brain and we want to do our best to try to keep him healthy.
Advice and Personal Experiences appreciated.