I'm new here - have read many posts for the past year and a half, and finally decided to join. Our son had a massive brain bleed in Feb. 2014 at age 6, and had an emergency craniotomy to remove the blood clot, which saved his life. The MRI after his surgery was clear, but an angiogram in September 2014 showed a very small AVM in his right parietal lobe. He had another craniotomy in December 2014 to remove the AVM. Following the surgery, the surgeons were very confident that they'd gotten it all. We just had a repeat angiogram last week, which showed a residual but active AVM - very tiny (2mm x 3mm). Our doctors did not expect to see this (neither did we), and now there is talk of another craniotomy next month to try and get the remaining bits. That would be 3 craniotomies in 18 months. Our son, by some miracle, came through the brain bleed and first two craniotomies with zero deficits. We are waiting right now for our medical team to discuss/get secondary opinions before proceeding. They have also mentioned Gamma Knife as a possibility to treat our son, but one of the surgeons mentioned he didn't think the procedure was suitable, in his opinion, for a 7 year old due to risk of long-term complications from the procedure. My question to anyone out there is - has anyone heard of 3 craniotomies so close together? We are just so overwhelmed with what to do next. Our doctors don't feel we should wait on treatment as this AVM has bled before and the first bleed was life-threatening.
Wow, that has to be incredibly hard to deal with, especially for such a young kid! I know that if a craniotomy does not remove all of the AVM, it will recanalize and regrow over time. Children with AVMs have a greater chance of developing another AVM because their brains and the blood vessels have not finished growing.
Having an AVM regrow in an adult is much more rare, although it can and does happen (I know because it happened to me after having an AVM surgically resected as an adult, and then finding out years later that it had regrown).
Most likely the doctors want to get rid of all of it to be sure it does not get the chance to grow again. These days, doctors want to do yearly follow ups with patients to be sure the AVM is truly gone.
You can always opt to get a second opinion from another doctor but chances are good a doctor will want to move ahead with some kind of treatment since the AVM has already ruptured.
I believe Tina White’s daughter has had three cranis, heartlightgirl. You can use the search box at the upper right to find her and connect, and you can also join our parents’ group (click the Groups tab above to find it). You must have been through the wringer. It is so hard on parents to have their little ones have to go through so many procedures to eliminate these stubborn avms. How lovely that your son has had no deficits. Thousands of us here are wishing the very best for you both.
Hi Hearthlightgirl, I must say that I admire your strength even to write this post as a father of 3 young boys around the same age this would be very hard to deal with, I had a bleed Dec 31st 2013 and had to have the emergency craniotomy to clear a large clot also, Then another craniotomy July 7th so approx. 7 months later which is quite close together, But not 3. I also have came through the procedures with no deficits except I do suffer from headaches or at least one headache that hasn't went away since the bleed :( , But its getting better and I find that setting small goals means that I meet those goals and see progress but its a long and slow road to travel. I would say that if you are having conflicting information from the doctors then please seek another opinion as there is no harm in getting as much information as you can especially when its your children :) .