fluid build up at incision site??

[hannahsmama]

My 8 yr. old daughter had decompression surgery on 2/21/12.  She has a small buldge at the top right of the incision.  She experienced headaches and fevers.  They put her on steroids which resolved all the symptoms but as soon as she went off the steroids the symptoms returned.  Has anyone experienced this?  Her NS wanted to do surgery we were hesitant to put her through that again.  The NS said his partner would not do surgery again but would wait as time can heal this fluid build up.  We opted to wait.  Has anyone had this resolve on its own?  Is there anything we can do at home to help it resolve?  Sorry for the long post.  Can't imagine putting my kid through another brain surgery unless there are no other options.  

[selmaS]

  I am thinking she may for both reasons,.....not just bcuz it goes with chiari,but bcuz of the other post op issue she is having.

The NL can do a clinical exam to look for signs of EDS, then if it is determined she may, they would send her to a Rheumatoid Dr and a geneticist to do more testing to determine the type.

Here is a link to more info-http://www.reumatologia-dr-bravo.cl/para%20medicos/crit%20y%20diag/DIAGCRITJHS.htm

U may also want to look at the video clips of a Dr explaining how EDS affects us.....-http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

[hannahsmama]

How do they test for it?  Do you think she may have this she to the swelling/fluid or bc it goes hand in hand with the chiari?

[selmaS]

EDS symptoms r not always noticeable....and she should still be checked....I did not feel I had it once I saw what the symptoms were...but I do.

  It is easy to assume that she does not have symptoms bcuz it is a congenital condition and she may have learned to adapt to the symptoms and consider them "normal" and will not express concern about them....

To be safe, have her checked.

[hannahsmama]

She has not been checked for ehlers danlos but she doesn't have any symptoms.  Prior to the mri finding the chiari she had no symptoms of chiari or any health problems.  Thanks for your answers.  

[selmaS]

  Hi and welcome to the Chiari forum.

I have to agree with Zygy2...what she is telling u is much what I was thinking in reading ur post.,

In addition to what she said, I would like to ask, was ur DD checked for possibly having Ehlers-Danlos?....

  Keep on top of the Drs and call them with ne changes in how ur DD feels or if her temp has a drastic change.

  And do post updates and know u r not alone : )

         "selma"

[Rahe28]

I dont know mych about this, I just wanted to stop and say welcome, and let you know that your daughter will be in my prayers. Like zygy, I have children as well,, and I could NOT imagine having to wathc them go through something like this. Good luck and I hope that she starts to feel better soon. Please, if you ever need to talk or jsut to vent, feel free to message me, or post a thread. This group is wonderful for support. As much care as she needs right now, you need support too. My love and thougths to both of you .

[zygy2]

My case is a little more complicated but I have had them in my head three times.  After the second I had the headaches and fever and the steroids helped greatly, when they stopped I was terrible again.  They had diagnosed me with aseptic meningitis.  This is a safer type than that bacterial but it still made me feel horrible.  I have had two leaks, which must be what her lump is.  They can sometimes early on do a blood patch to try and see if they close but once you have the leak for a while they then refer to it as a pseudomeningocele.  I have had them after each surgery.  I have a high pressure head with csf it appears.  A leak/pseudo can go away on its own and it is worth waiting a bit to see if it does resolve on its own but after a certain period of time the only way will be another surgery and you are right that it is a stinky option.  I had fevers on and off for probably a month and it was horrible and drove me crazy.  I am so sorry your daughter has to go through all of this.  The things you can do for low pressure headaches from a leak would be to lay down and drink lots of caffeine.  I just got an LP Shunt put in last week and I have a constant low pressure headache and am laying down almost all day.  The caffeine does help but you can only drink so much.  Laying down usually takes the headache away within minutes if it is a low pressure headache.  I hope you find answers for her, this can be a long frustrating process at times.  I hope some of my information was useful, my case is a little more complicated so I don't want to confuse you too much :)  Much love to your daughter, sending healing happy thoughts her way!! I am a mom too and I can't imagine watching my daughter go through this stuff!!  -zygy