I had hoped that I would never have to have this discussion. My son Luke, experienced a rupture in April of 2013 (he was 8) and a large AVM was found in his right temporal lobe. After being told it wasn't surgical and then finding a specialist that said it could be removed, we took him to Phoenix where he had a craniotomy. The post surgical angiogram showed NO residual AVM. We were told the chances were good that the AVM was completely resected.
Fast forward to now: Two contrasted MRI's showed no regrowth. On November 12th Luke had his two year angiogram to verify. He was so excited to get a clean bill of health for another three years (we were told his next follow up would be that long if all clear)
Luke's angiogram showed a small AVM in the same location as the original. We are devastated for our little guy (now 11). We see the neurologist on December 9th for more information.
Have any of you received this devastating news for a cerebral AVM? I would be interested to know the outcomes/treatment plans for your child.
I’m so sorry for the news you’ve received. My daughter is 12 and her AVM ruptured May,31 of this year. We go for a follow up angiogram December 16th. I don’t have any advice other than recommending a wonderful surgeon. We’re in the Atlanta area. He’s very skilled and companionate. I’ll be praying for your son and I’m hear for you to talk to.
I am sorry to hear your news. My son had a craniotomy two years ago and his one-year angiogram was also AVM free. Next month will be his two-year check-up & it's only an office visit, so I live in fear that he may be having undetected problems until his next angio at 3 years. Your story is my biggest fear and I wish your son and you the safest, most effective treatment. Perhaps it is some consolation that the AVM is small and when it is gone, that will be it. Please keep us posted.
We’ve gone through something similar. My daughter had a DAVF resected by a craniotomy when she was 10 weeks old. It never bled thankfully but presented between her scalp and her skull. Followup scans were clean until she was five, when it appeared that another DAVF was trying to push its way through her skull in almost the same area (maybe an inch apart). She also developed a CSF leak at the original surgical site so another craniotomy was performed and corrected both issues. A follow up angio eight months later showed a small AVM actually in her brain this time and it was successfully embolised. Another angio two years later showed that it has stayed closed. She’s now 10. We go back at 13 for another and we were told this is key because the hormones of puberty can cause havoc in these kids. At this point, I’d be devastated yet not surprised if the AVM regrew or appeared somewhere else. We’ve been extraordinarily lucky. All my daughter gets are headaches and tires quickly when doing strenuous physical activity. She’s been diagnosed with ADHD but I don’t think that has anything to do with her AVM, it runs in my husband’s family.
I’m so sorry to see your son has to go through all of this again. At least this time it’s been caught early and hopefully can be treated with minimal side effects. Best wishes for you and your family.
Unfortunately I’ve read and been told on several occasions that AVMs may regrow in children as their brains are still developing…it sounds like this may of been the case for little Luke…I’m glad they caught it early though and pray everything works out for you guys…please keep us updated and will send prayers your way…God bless!
Luke’s parents, I am sorry to hear of your news. Our daughter at age 12 was diagnosed with an avm in her cerebellum. She was at a very high risk of a bleed, and it was only one month from time of diagnosis to surgery. She too had a craniotonomy to remove the avm. We were ecstatic to hear it was completely resected. That was in September of 2014. She lived a mildly restricted lifestyle for the last 12 months just as a precaution because of the craniotonomy, but we have our daughter back just as she was pre-avm. Needless to say, we thank God daily for the wonderful outcome. We KNOW it could have been much worse, and we pray for those families who are having a much more difficult road. However, like you, we were feeling we were scott free. We were informed there was a minuscule chance… Our doctor usually performs an angio one year out to see if there has been any regrowth, but he has chosen to wait three years. Don’t laugh, but it is due to the anxiety level of my husband. He could not handle knowing “There might be regrowth there. Let’s watch it for a year or two and scan again.” I seriously thought this was over. Obviously, it happens. From what we were told, the positive is that the doctors know this information early and can treat it before a bleed. From a parental standpoint, this is terrifying. Hugs and prayers to you and Luke.
Thank you all for your prayers and kind words of encouragement. I pray for your loved ones as well. Megan's mom, I pray that Megan continues to be AVM free.