Our 5 year old son had an AVM bleed in few months ago. Amazingly, he’s already back to normal, active, etc. Totally 100%.
However, it is a very large (6 cm * 8 cm), diffuse AVM on the left side of his brain. Only option for him, we are told, is some sort of radiosurgery – either linear accelerator, gamma knife or proton beam.
Seems like we have no choice but to treat this thing, even though all the doctors say that it’s dangerous to treat (but the dangers of not treating are apparently worse).
From reading this website, it just seems like treating this now could make it worse. And if not, it seems that gamma knife might not be the right “tool” for such a large AVM. Don’t really know much about proton beam, other than what you can find on the Internet.
Anyway, if anyone has any advice on this from their experience, we’d be very grateful to hear it.
I cannot describe the difference in types of radiosurgery, but I gather that all three are “pinpoint” type as opposed to general radiation that would affect his whole head. My wife had PBR twice on an “inoperable large AVM” (once prior to embolization and once afterwards). Between PBR and embolizations, the AVM became small enough that it was able to be removed via microsurgery. Seeing her first scans, the AVM covered the whole left half of her brain, so it was quite a change to get it small enough to operate.
Of all kinds of treatment, other than doing nothing, it is my belief that radiosurgery is the least risk for the procedure. As for risks of collateral damage or issues from the radiation, I don’t know.
At his age, treating it seems to me to be prudent. If it can be controlled now, every year that goes by, there will be advances in treatment options.
Our son had significant brain surgery to treat epilepsy at age 21. I can tell you that watching your child go in for surgery is the hardest thing you will ever endure. God Bless.
My daughter had a bleed back in August, and like your son, bounced right back to 100%. It took 5 months for us to get through the process of tests, and 2nd and 3rd opinions etc. She just had an embolization and craniotomy on the 20th of January and is doing great!. I would make sure that you get several opinions on how to treat his AVM. You may have done that already, but if not, I definitely would. Different surgeons will have different approaches. I definitely feel for you, and all of the decisions you are facing. It is a tough place to be as a parent. Just take it one step at a time. We ultimately preferred the surgical resection, because we just wanted it out, but our daughter’s AVM wasn’t as complex. One thing for sure, is that kids are very resilient! We will be praying for you.