My son has pial synangiosis surgery on both sides on May 31st. He has been doing really well, except for the last 2 days, the left side is swollen and red right in the middle of his incision. The right side incision looks perfect, stitches have come out and no scabs at all.

It doesn't seem to bother him, he is eating, drinking, playing, no seepage from incision, no fever. This left side has been swollen ever since the surgery and I emailed pics to drs. Scott n Smith in Boston and they told me it was because that is the side he had the last 2 strokes on (1 2 days aftr surgery).  I called Childrens Hosp here in Phila today and spoke to the neurosurgeon on staff. He told me just to watch it, as long as it isn't seeping, and he doesn't have a fever or acting out of the norm, it could just be irritated.

It is making me very nervous, but I will be calling the hosp here Monday morning to talk to someone. To go there on a weekend is kind of a waste of time, unless it is an emergency which I don't think it is right now. All intern in on weekends.

Has anyone gone through this after surgery?.

Well, went to er at children's hospital here in Phila. today, spent 6 hrs there! Christopher is diagnosed with Pseudomeningocele which is abnormal collection of cerebrospinal fluid. Didn't get many answers and i am now waiting to hear from Docs in boston, also sent them new pics of Chrisopher's head.

I just hope it resolves itself and he doesn't need surgery!
:-/

I went through it after my surgery three years ago. I resolved itself mostly after a few months. It still shows up on some of my tests but the side of my head does not look swollen any longer. It wasn't pretty at first and was originally quite worrisome looking. I went through quite a few things before they decided to let it be as long as it didn't get any bigger. Feel free to message me if you have any questions. I hope this helps ease your fears some.

Reagan

My daughter molly had a break and leak after her surgery I was scared to death, it drained and healed our local er had no clue what to do. my sister had a severe leak due to infection, the good news is your body makes more everyday, it will leak out of any opening in the skull and drain. keep it clean and watch for infection, without a sore i assume the body will reabsorb the excess fluid, but any sign of fever i would have evaluated right away! not a Dr. but lived through it, hope this helps. amiee, mollys mom

Well, what a week! The day after we spent 6 hrs in er at CHOP, the fluid starting leaking out of christopher's head. Went back to er at CHOP and from him freaking out from what they were doing to him, the fluid was pouring out, it was so scary! They basically told us they wouldn't touch him cause he didn't have the surgery there. They told us he needed a shunt put in his head and a cathater into his stomach to drain the fluid. I made them call Dr. Scott and Dr. Scott wanted us in Boston asap.

CHOP wanted us to take chris home since there wasn't anything they would do and get to Boston the next day. Well, we had few choice words  with them (if you know what i mean!) lol and they arranged a small jet to take us to Boston! It was cool and christopher loved it! Arrived in Boston Wednesday night about 9pm and Dr. Smith was there. By this time the swelling was almost nonexistent because most all the fluid drained out while in Phila. We told Dr. Smith what CHOP had told us and he looked at us like we were crazy! He said Christopher didn't need a shunt! He also told us since Christopher had a stroke 2 days after surgery, along with the pressure from it,  probably pushed some fluid to the side of his head and it had nowhere to go. He had an MRI and complete blood work done which showed nothing wrong, no fever, no infection. He was given a few doses of antibiotics just to be sure. had plastic surgeon come in to see if incision needed to be cleaned up but they decided not to. We believe all fluid is out, it hasn't leaked in 48 hrs we were released today.

My husband and I decided, we will be going to boston for all Christopher's care regarding Moyamoya. I guess if it is an extreme emergency we will have to go to CHOP. Just can't believe our experiences there have been horrible!

Thanks for sharing your stories, it always makes me feel better to hear we are not alone and everything worked out for you guys!
:)
   

Just wanted to add that the left side of my son's head now has a big indentation where the swelling was, don't know if this will fill out or not! I don't really care as long as the fluid doesn't build up again.

OMG, I just saw your posts! (jsut got back from vacation) I'm so sorry your family has had such a difficult time. Sounds very scary!!  I'm glad it seems to have resolved. I hope this is the end of complications. Please keep us posted.
Mary Grace

Hi MaryGrace,

It was very unexpected and very scary.It didn't seem to other Christopher at all, thankfully! The really scary part was what CHOP would have done to him! He is fine now and praying it stays that way.

Hope you had a great vacation!

Karen

Okay, I want to ask you about something kinda off topic. 

You said that Chris had a stroke two days post surgery.  Matthew had another stroke about four days post surgery.  It was actually decided that after being hooked up to an IV for four days (and then unhooked) that he had become dehydrated.  This had been the cause of the stroke. 

Anyone else experience anything like this?  Just curious because I also belong to an email group through www.pediatricstrokenetwork.com where another mom is just getting a moyamoya diagnosis and is nervous about surgery (like we all were).

Kim

  Kim,  I used to belong to the pediatricstrokenetwork but my computer crashed and I haven't signed back up. Anyway... My daughter had a very severe stroke 4 days after ehr first surgery. I think the biggest issue with her was that she was not in a very stable condition at the time of ehr surgery. She ahd suffered a stroke on the way to Boston the day before her surgery. It was decided that we really didn't ahve a choice but to go ahead with surgery since the strokes were coming so fast and getting more severe. They had to stop the surgery after the first side since she wasn't doing well and did the other side a week later. This surgery went well and she's had no further storkes in 9 yrs. Even though there were complications I believe it saved ehr life and have no regrets. I know this is one concern when entering into the surgery, their condition and the time they've had to heal after a stroke. Most kids seem to do very well especially if they are in good condition at the time of surgery.