Chiari Malformation Community
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Avatar universal

Fluid build up behind the head

My son soon to be 4 in January went in for surgery Nov 20th. He had issues walking and through an MRI they had found blockage in his lower back, the same area where he had spinal bifida which was repaired 1 1/2 ago. He also has fluid in the brain. The doctor at first told us he was going to put in a cranial shunt and a lower back shunt. After further review he said there was going to be somewhat of exploratory surgery in the head. He would reopen where they repaired the kyphosis and look around. After a 8 hour surgery, he said he had found a chiara malformation caused by the previous surgery for kyposis and worked on that and installed the shunt in his lower back. The next day the doctor could tell he was regaining strength in his feet and legs and later that day actually walked and great too. We were allowed to bring him home two days later only to have him become extremely lethargic and a high temperature. We immediately took him back to the hospital and by the time we got there, noticed that the back of his head was bulged out full of fluid. He has been here for 2 days now on a strong antibiotic for the fever as well as some steroid to try to absorb the fluid. The fluid has gone up and he has just now got a fever of 102. The doctor of course is not in being that its Thanksgiving only to be told that the best they can do is give him tylenol if it reaches 103. What am I to expect here as far as treatment? are they going to be able to get the fluid out or absorbed without another surgery? I am starting to worry more and more on the outcome of this and looking for some thoughts on what to expect. He is at the Mott Hospital in Michigan.
9 Responses
620923 tn?1452915648
Hi , I am so sorry u r having to witness ur child going thru such a difficult time.

Not being medical pros here I can only say what I have heard from other members....but he could  have a CSF leak.....or a rejection of the patch causing infection.

Do u know what kind of patch was used? When a surgery is done for chiari, many NS open the dura and need to put a patch on it...the patch can leak....or the patient can have a reaction to the patch itself. There r several types...synthetic, bovine, cadaver and patients own skin. U may want to ask the dr about this and see if it is a possibility.

I pray the u get answers from the drs as well.

Please keep us posted on his progress.


Avatar universal
That is sooo terrible, I can't imagine having to watch my child go through that.  I agree, it sounds like he has a CSF leak or problem with the patch.  We've had several friends here who've gotten hydrocephaly right after having the decompression surgery.  It really seems like the hospital ought to have access to a doctor that can help your child, even over a holiday.  Will say prayers for your little guy.

Avatar universal
I know that what you are watching your child experience is horrible for you. My daughter had a decomp surgery on Aug. 14th and has had terrible problems ever since. She, too, has the bulge on the back of her head and fevers. Her blood work looked fine, but they finally did a lumbar puncture and found aeseptic meningitis. They believe this is probably because she is rejecting the bovine pericardium patch or the sutures. The NS put her on steroids (dexamethasone) for 8 days. Her problems persisted so they did a 2nd then a 3rd lumbar puncture and she is now on another course of dexamethasone. This time she's on it for 16 days. She is puffy, irritable, still has fevers, and has trouble walking due to pain in her neck, back, hips, and knees. We got a 2nd opinion with  NS at the U of Minnesota, and he said  to let the steroids work and that re operating is not a good option. He told us it could take a year to resolve these problems. In the meantime, she's not able to attend school so we are considering homeschooling. We have been referred to the Mayo Clinic and should get the appointment date some time next week. Hopefully they will be able to help resolve our daughter's pain. We will continue to post on this site once we find out something new. Take care and be patient. Seems like these issues are more mystery than exact science.
Avatar universal
They took him off the medicine yesterday afternoon. He had a fever this morning at 1:00 am this morning. The doctors findings are that he does not appear to have an infection, he is a little weak which is expected so they wish to see if he gets a fever withing 24 hours fromt the last fever, if he does not get one they said he might be able to go home tomorrow. If he does get it they say it could be a virus or bug. They did take a blood sample yesterday for a culture and the results for this should be back tomorrow around 6 in the morning. The bulge on the back of his has not grown and they said this is normal and will take 4-6 weeks for the body to absorb this. He is walking around a little and in good spirits most of the time other than when he has to get blood drawn again or medicine or just plain home sick. I am not sure about the meningitis, They did a cat scan I think to avoid giving him a spinal tap due to the repair on the area because of the spinal bifida. He has fused vertebrae along with rods and they said they would have to give him two spinal taps in order to get enough so the cat scan they said would work. We will find out tomorrow on the culture and if between now and then hope he does not get a fever. Thanks all for letting me know whats going on and thanks for the prayers.
980510 tn?1282010946
I am so sorry you have to go through all of this, Your son sure sounds like a fighter.
I hope they come up with an answer soon enough for you.

Hang in there
Avatar universal
He has done really well all day today walking and talking and having a good time. On the 18th hour off the medicine he just got a fever of 100.9. I am not sure what to make of this other than it appears he only has a fever in the evening? I am not sure whether he can go home now. We will have to wait and see tomorrow when we talk to the doctor and the culture comes back with results. He seems to be in a little bit of pain but I guess thats expected as much as he has been moving around. This couldn't be meningitis could it? I mean he doesnt have a fever all day and then when things whine down in the evening he starts to get one.
Avatar universal

I am so sorry that your little guy is going through such a terrible thing. My oldest boy had a second tethered cord release and he ended up with a CSF leak and eventually Meningitis. It was quite a few years ago so I don't remember if his fever went up and down, but he was very weak and lethargic. We to had to wait an entire weekend in the hospital as all of the pediatric neurosurgeons were away at a conference. Upon there return, he went into surgery and it was discovered that the dura patch they used had pulled away, resulting in a CSF leak and Meningitis. The Doc that did his repair did not use a patch but instead sewed his dura back together without a patch. After this surgery, he was in the hospital for 2 weeks, and then released, but still weak at home for 2-3 weeks, and also on very strong antibiotics for meningitis.
We too are in Michigan but are doctoring out of Childrens for our neurosurgeon, and see Doc Bloom for urology at Mott. You are your boys advocate so don't be afraid to speak up and ask whatever you need to as these docs work for you.  Sometimes you need to get a bit firm but still nice to get to the bottom of the situation.
I will pray for your darling son, and for your whole family as well.  
Avatar universal
Thank you all for the encouragement this far. He came home Sunday around noon. All seems to be fine and the fevers that are once a day are dropping down. Yesterday topped 99 degrees and he hasn't has one yet today. One of the concerns I have is this fluid that is in the back of the head swollen up like a bubble. Will this actually be absorbed by the body? The doctor states that this should be gone in 4-6 weeks. Looking at him though it is hard to believe that this wil occur. Can this burst open on its own? There has been no leaking and the incisions look great. Has anyone had this fluid built up on the back of their head with a success story of it being absorbed? He will be having his 2 week ct scan post surgery but I am almost afraid to take him in fear of them keeping him for a week or more again. I know if he does its for good reason but he is getting so traumatized by the experiences of the hospital.
620923 tn?1452915648
Hi John...so glad to hear he is home and I pray he absorbs all the excess fluid.

I did not have this issue, but there r others here who have.

Sorry he is not having a good experience with hospitals, but I didn't like it either, so I can't blame him.

I pray he continues to heal
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