momkaren
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Posts: 126
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Hi Amit,
My son was 11yrs old last year when he went through bilateral pial synangiosis surgery at Boston's Childrens Hospital on May 31.
Towards the end of June, he started to develop swelling on the left side incision. The right side looked perfect, the stitches fell out quickly and no problem. The swelling grew a lot, almost overnight and it was very red. We took him to the er at Children's Hospital of Philadelphia (we live in Philadelphia). My son does not handle situations like this well, he has Down syndrome and Autism. When they started poking and prodding, you could see the lump/swelling pulsating. They told us it was a Pseudomeningocele (abnormal collection of fluid) and to watch it and keep it covered, if it started to leak bring him back.
To make a very long story kind of short, The swelling started to leak and back to the er we went. We were flown to Boston because the drs at CHOP did not want to touch Christopher! While in Boston for 2 days, leaking stopped and we came home hoping it would clear up. Well, it didn't and one day while I was changing the dressing, I almost fainted when I saw a hole in his skull where the swelling was! It wasn't very big, but you could see bone through it. Another trip to the er, another surgery to close the hole (here in Philadelphia), and then more problems....the hole came back after the stitches came out from the 2nd surgery. We finally went to back to Boston and Christopher had another surgery to close the hole. This was done by a plastic surgeon. He had to shave the bone and remove one of the titanium rods because it was to close to the hole. The plastic surgeon was Dr. Greene at Boston's Childrens Hosptial. We then went back to Boston again to have the stitches taken out and thank God since then all has been well. The incision site is lumpy and does not look as good as the right side, but as long as it is healed I don't care!
I don't mean to scare you by telling you all this, but i did want you to know what my son went through. I was told there is always a possibility of developing this after brain surgery, but it is not common. Especially if your child had any strokes on that side prior to surgery, which Christopher did. I was also told this problem could resolve itself, but in my case it did not.
I never was told why or how the hole in my son's head came about. I was also angry this happened because I took my son to Boston since they are the top docs in the field of Moyamoya. I think the hole came about due to the amount and length of time leaking and the problems we had with it being taken care of. I would push to have this problem resolved ASAP! It is such a scary situation!
We were in and out of the er so much throughout the month of June last year and finally had it the problem fixed. The rest of the summer we spent in the house due to my son having to take it easy. It was so nerve racking, and yes, exhausting.
If I were you, I would not wait long. If it continues to leak, I would take him back the the drs. I don't know if they would have a plastic surgeon do the surgery or if Dr. Smith or Dr. Scott would do it. Dr. Greene , the plastic surgeon performed the surgery on my son because of the hole.
If you would like to talk more and have any other questions, I am here for you and will check this board frequently. Best wishes to you and your son and he will be in my prayers.
Karen
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