My son had Pial synangiosis on both sides 5/31. He had a stroke 2 days after surgery. All went well considering and we came home. He developed a pseudomeningocele (collection of fluid) which was very swollen and red. Went back to Boston last week for this and by the time we got there it all leaked out. Stayed for 2 days and nothing so we were discharged. It looked like it was starting to heal and form a scab. This morning when he woke up the gauze he had on was soiled. When I took it off, I see a small hole! I can not tell what  I see inside the hole.....don't know if its bone. It is not bleeding or leaking, but it does leak a little if he lays on that side.

I am been going back n forth with Dr. Smith through emails and honestly don't know what to do! I emailed Dr. a pic of it, but he can't tell if it is bone through the hole. We are min 6 hrs from Boston and really can't afford to go there again this week. Hopefully we can go to CHOP and have this taken care of. Dr. Smith said it might need to be closed.

The right side of my son's head healed so quickly and nicely, I just don't understand what is going on. All through this my son seems fine, playing, eating and drinking like normal!

MomKaren,
I am sorry you are having this difficulty. It may be due to the body wating to heal one side before completing the healing on the other. But I am no doctor.

I was a unilaterial MM so I am currious to hear from another Bilaterial MM that had both sides done at the same time to see if they experenced anything symilar.

Hope he heals and feels better,
Becky

We had this same issue. The very top of both incisions looked infected. They were weeping this nasty yellow/clear liquid. We live in chicago and going back to boston was not an option for us. We were admitted to our local childrens hospital who was in contact with Dr. Scott/Dr. Smith the entire time. They thought it could possibly be an abscess, but felt it was strange that it was on both sides. After lots and lots of tests and a week in the hospital we were told it was Malachi's (our sons) bodies way of trying to fight the foreign objects (titanium plates and screws). We were discharged with strict orders to keep the sites clean and covered at all time to prevent an infection and after a few weeks (yes weeks) they closed and we havn't had an issue since

My son was admitted to childrens hospital here in Philadelphia this past sunday and on Monday, the left incision had to be reopened, cleaned and restitched. He had a superficial skin infection. Now he has 10 stitches that have to be removed on the 20th and he needs to be sedated because he will not stay still for it!

And, a cat scan revealed some fluid on the right side of his. Not only that, but after this procedure was done, I noticed a lump on his head above his right ear. Well, the neurosurgeon who did this procedure said that the lump could not be from the procedure he did and is probably scar tissue built up. Well, it was not there when we got to the hospital on Sunday! Could scar tissue build up and pop out that fast?? He also told me that the fluid they saw on the scan may or may not be a problem.....gee, thanks a lot!

I am so angry and frustrated with the care we are receiving with childrens hosptial here in Philadelphia. It seems that since we decided to have the initial surgery done in Boston, the drs. here in Phila. do not want to do any follow up care with my son.

I sent an email to drs in Boston about what has happened and will most likely be going back to Boston soon for them to check my son out.  :-[