AOSupport

Our son is now 2.5 and his scalp ACC has healed nicely. He still gets ulcers, but they are small and manageable.

We have a plastic surgeon at Children's Hospital in Seattle where we live who is pushing us to start surgery to remove the scar tissue on top of his head. He estimates it would take about 4-5 surgeries, all one day out-patient procedures. I am so torn about this. On the one hand it would be nice for him as he grows to not have a large bald spot on top of his head and of course it would be wonderful to no longer worry about ulceration, but we don't want to put him under unecessary strain simply for a cosmetic issue given he's going to need surgeries in the future anyway to deal with premature suture closure that occurred when his skull defect closed. Now his skull is putting pressure on his brain as it isn't growing sufficiently.

Has anyone else considered or actually removed any of the scar tissue related to ACC? I also have concerns with how the tissue would heal, although the plastic surgeon claims to have performed this procedure several times successfully on children with ACC, but not AOS.

Becca

I cannot speak from personal experience as we have not had this procedure done and really have never considered it. I have to say though AOS changes things. It never seems to be as simple when AOS is involved. What should be an easy surgery for a normal kid, may not always be that for an AOS kid. I think the biggest difference is the blood flow. I know not everyone with AOS has issues with blood flow so this may not be applicable to you but I know we have this problem and many do. Lack of good blood flow keep things from healing quickly and easily. Just something to consider if it is a problem. However- if you have to do surgery anyway, could they do them at the same time? Obviously if it will take several surgeries then no but if they can do the skull and one of the scalp surgeries at the same time that could make it a bit easier? Maybe? I know Isaiah recently underwent this surgery and there were a few hiccups but I think overall he is doing well. Shannon has posted her blog before at www.isaiahupdates.blogspot.com you can read about his story there and I am sure she can answer more of your questions.

We have considered this with both kids and have been advised by our plastic surgeon that 7 is a good age as they will have a better understanding of what is happening and be able to let you know how they are feeling. We have spoken to Madison about this as she is 6 and she has told us she does not want her 'special spot' on her head taken away which is fine by us and we are going to leave it up to them in the end. The plastic surgeon has told us that it can be done later if they decide they want to have it closed over.

Steve.