Since this is quite the prognosis change, I wanted to share with all of you. My 8-year-old daughter had a craniotomy and AVM resection a couple of weeks ago. When we had our initial talks with the neurosurgeons at Mayo Clinic, we were told that this would be a one-time surgery and that it would eliminate my daughter ever having another AVM in her brain. After my daughter's surgery, the neurosurgeon informed us that new research indicates that an AVM can regrow in a child. There's apparently debate whether it's true regrowth or simply deterioration of the original AVM. But bottom line ... my daughter will be monitored by a neurosurgeon for many many years.
My daughter has had two surgeries to repair AVMs. The first one had ruptured and left my daughter with a massive bleed on the right temporal side. The second one was discovered before it could rupture. The first surgery left my daughter in pediatric ICU for two weeks and a total of seven weeks of hospitalization/inpatient rehabilitation. The second surgery was amazingly simple -- daughter ate dinner day of surgery, walked next day and went home on day three.
None of this has been simple, but my family has been blessed with more miracles than I could possibly count. My daughter calls herself a miracle child :-)
I totally understand what you are going through. My daughter had 1 embolization and 1 gamma knife treatment and was told the radiation would take 3-4 yrs to obliterate the AVM. She had MRI’s for the next 4 1/2 years and then scheduled for an angiogram to ‘finish off’ the avm with another small dose of gamma. Well, right after the angiogram, we were pulled aside by the neurosurgeon and told that the original area of the avm was gone but that a new area had formed twice the size!! Since then she had another round of radiosurgery and this time it was LINAC last May. This year has been difficult as she has developed grand mal seizures which they say is a result of the swelling which is probably a result of the radiation. We go back April 6th for her 1yr follow up. So, having said that…Yes, in children it is very possible because thier body is still changing especially as they go through puberty. My daughter was 6 when she first bled and is now 13. Please hang in there and I thank Ben everyday that he created this great support site. Please stay in touch…Kim McDermott
Yes, we have also been told that though it is very rare, AVMs can regrow in children. At least it is very rare, but then I say, so is having an AVM, so it is hard to bank on “rare.” At least they know now to monitor kids until adulthood, just in case. It seems that many of the surgeons have different protocols in terms of the long term follow-up of kids. I started a discussion in the parents group, to compare notes on how everyone’s surgeons planned to follow up. It it interesting, you might want to check it out. We are currently waiting for our 10 year old daughter’s post-craniotomy angio, to confirm that they got it all. Can’t wait for the definitive “all clear” at least for now! We too feel like Lindsey is a miracle child, having made it through a hemorrhage and craniotomy with no deficits. I cringe at the thought of what could have been.