Looking for someone who has had an AVM repair as a child. My son was 8yrs old had surgical repair of an AVM deep in the frontal/ parietal lobe 3cm was the size . For the last 2 yrs the Cerebral interventional Radiologist tells me my son has some abnormal venous vessels she does not see an arterial feed, and that i should discuss the findings with my son's surgeon. His name is Dr. Sutton chief of neurosurgery at CHOP(Childrens hospital of Philadelphia) He says i am not concerned at this time. There is nothing that can be done. As a Mom and nurse I am very concerned, i want to make sure that i am doing everything possibe in my sons best interest. Has anyone gone to Jefferson as a child ? Not sure if I should stay with pediatric hopitals? Looking for anyones opinion on best Hospital for a 2nd opinion for a 10 yr old child.
Hi Diane. Totally understand your concern and this is a great place to get feedback from others. I would def contact Kim (Jaclyn’s mom) as they go to CHOP and J is 12. She hasn’t had surgery, but diff forms of radiation. Another is Janice, (Andrew’s mom) who had surgery, the AVM reoccurred, and had surgery again. I bet she would be a great one to discuss with you and find out more info.
I had 2 separate bleeds as a child. I had a cranio at the age of 5, which grew back by the time I had my 2nd stroke at 14. The docs say it’s bc I was a child and my brain was not fully developed. So I think it’s a great idea that the surgeons are monitoring him. I see you are in Philly - close to NYC. Perhaps you want to talk to my surgeons/ team. My surgeon’s name is Dr. E. Sander Connolly and is located at Columbia University Medical Center. It doesn’t hurt to get 2nd or 3rd opinions.
I have heard good things of about Dr. Rosenwasser at Thomas Jefferson. That is probably where we would go for a second opinion if we have too. Trevor was successfully operated on by Dr. Souweidane (performed the craniotomy), Steig and Riina (Interventional radiologist and neursurgeon). All are wonderful physicians and world reknowned. My company pays for a vendor that we can go to and research “best doctors”. That’s how we found them as well as, some word of mouth. They are up in NYC. I think Dr. Rosenvasser is not pediatric but he absolutely performs surgery on peds. I believe there is someone on this site with a baby that had surgery there. I learned through this ordeal that a second opinion for me will always be a must…even if that first opinion is one I like. I just need more information so that I can make the best decision for our son. After much testing at CHOP, we were told that Trevor was to high a risk for surgery and that we should seek radiation therapy. The drs in NYC felt differently. We are now on the other side of surgery and we have a son who is back to being a healthy wonderful boy (k - he was always wonderful! ). I try not to think about the what if they find something in one of his test down the road. It’s just too much right now but I know it is a reality. I would send his records just to get a second opinion. I didn’t even have to travel to NYC at first. I just sent Trev’s records and they read them and got back to me that they felt that they could help us. Best wishes.