Hello all,
Our son , 11 months old underwent pial synangiosis bilateral at boston children hospital in march this year. he now has a CSF leak coming out of his incision sight. Does anyone know what to do. has anyone had a similar experience and if so how was it fixed. we are already in touch with the neurosurgeons and they are suggesting a wait and watch. if the fluid continues to come out, they are suggesting surgery again! we are really tired and exhausted with so many things going wrong with our son..
we took him to the best doctors in Dr. Scott and Dr. Smith in the world, but still we are having complications post surgery..

My daughter did not have complications after she had her surgery for MM, however she also had surgery for a Chiari Malformation 5 years ago, in part of the surgery they made a patch with some dura from another part of her head and sewed it down over the opening they made at the base of her skull. A week and a half after surgery she started leaking CSF, she also was running a low grade fever in spite CSF would absorb back into her body. We stayed a few days went home and she started leaking CSF again 2 days later. They had to go back in and sew that patch down. She hasn't had any trouble since. I am not sure what all is involved in the pial synangiosis since this isn't the type of surgery that Shelbi had to help with her MM. But the main thing they would tell me before they actually went back in and sewed the patch down was to keep her head elevated as much as possible, that was much easier with a 10 year old then it will be with an 11 month old. Good luck.

Hi,
Your problem sounded familar to someone else on this board.  I looked through past comments and found a comment from "momkaren".  The first post was done July 12, 2011 titled "UPDATE: Possible Problem after Surgery" and more post were added after the original post from the same person.  It sounds like her son had a similar problem to what your son is experiencing. 

Tish

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

Hi Amit

My daughter, 1 year old at the time, also developed a pseudomeningocele immediately after surgery. Her surgery site swelled quite alarmingly.

I'm sure it's been explained to you, but what happens sometimes is the cerebrospinal fluid, which also surrounds the brain, leaks through the holes in the skull and wells up between skull and skin. Not entirely uncommon in brain surgery.

I remember at the time our neurosurgeon ran off 7 ways of dealing with it. We obviously chose the non-invasive option 1st which was for her to wear a balaclava type thing (we called it her 'cosmonaut' cap) which would hopefully exert enough reverse pressure to encourage the fluid to re-absorb into the skull. We tried this for a couple of days unsuccessfully.

We then re-looked at the other 6 options with the surgeon and chose a method whereby he would place a tube, subdermally, from the base of her spine to her stomach. Compared to brain surgery, this procedure was quick and simple. The idea is that any excess cerebrospinal fluid pressure build up would drain into her stomach. A day or 2 later and the pseudomeningocele was gone.

Take care
Mark (Luca's Dad)

Thanks for the info mark. Where was the surgery done ?

Luca was operated on in Newcastle, UK at a very similar age to your son. Hang in there, Amit.

Stay strong
Mark(Luca's Dad)

I would like to add an update and a cautionary note. In February this year it was discovered that the LP shunt at the base of Luca's spine used to drain CSF to relieve the pseudomeningocele has continued over-draining for 4 years and actually pulled her brain down into the cavity near the top of her spine. She was having these 'episodes' more and more frequently that we thought were TIA's but turned out to be her brain slowly pressing harder against her brain stem - critical if not discovered. After numerous precautionary scans to check on the moyamoya over the 4 years, thankfully one of the radiologists checked beyond the moyamoya and noticed the herniation of her brain. We closed off the shunt and her progress has been remarkable since. No more 'episodes', she's far more energised and her mobility is going from strength to strength. We've had a 3 month scan since closing it off and there are already small signs that her brain is recovering to it's  natural position.

Please use this LP shunt method for draining CSF with extreme caution.

Take care everyone and stay strong
Mark (Luca's Dad)