another bulge at the incision site

[beentheredonethat2x]

Help! We noticed a large bulge at my daughter's Chiari I malformation incision site 1 1/2 months after her surgery. They decided it was a spinal fluid leak. She had a lumbar puncture and MRI and hospitalized her with meningitis. She got out of the hospital a week ago and yesterday after a bout of horrible head pain and pulse rate of 130 finally fell asleep crying. She woke up with a new bulge on the back of her head this morning. She takes 60 mg nightly of amitriptyline and it doesn't do a thing for her head pain. She was crying that she wanted to go to the ER last night, but we've been there so many times and they do absolutely nothing for her. We've been to our primary care physician and a local pediatrician who say they don't know what else to do for her. Her neurologist just added high doses of riboflavin, magnesium, and 1000 mg/day of calcium, which hasn't done anything either. The neurosurgery group says the bulge is harmless. They sent her home from the hospital with a fever, which she always has! They decided they couldn't resolve it so we are supposed to keep a fever log for a month while she continues to suffer. Is there some other type of doctor/specialist that we have missed? My daughter is seriously suffering...and she's not a psych patient. She misses playing with her friends and loves school but rarely makes it there. She just wants her life back!!!

[n40066]

i had meningitis in 1992.  it was one of the most painful things i have ever lived thru.  i hate to tell you this, but i spent 8 weeks in the hospital with it and another month and a half at home before i was back to my old self!  the only thing she can do is try to keep herself calm and keep the house dark....the light used to really set me off!  i feel for your daughter...what she is going thru is awful.  but tell her it wil get better, it just takes time.  and i know that won't help her any, but there really is nothing anyone can do.  the dr had me on strong pain killers that did help control the pain some and i'm shocked that her dr. is basically giving her nothing more than advil!  demand they give her something substansial to ease her pain!

[beentheredonethat2x]

They called it aeseptic meningitis.The neurologist thinks she is rejecting her bovine pericardium dura patch. This could cause the red and white blood cells with a high % of neutrophils in her spinal fluid. She isn't contagious, but she is in terrible pain.

[Shane99]

What did they do/say about the menengitis?

[casepacker]

When I had my decompression surgery it was not long after that a bulge showed up on me, it was a spinal fluid leak, it was terrible, so I can feel for her.  The drs. kept trying to say it will heal itself.  Finally I went to the emergency room and the dr. there said you need to get to your neurosurgeon and make him do something about it.  So, that night I got a shot of pain killers to make the drive (3 hours) to get to the emergency room of where I had my surgeries and they took me in and finally had to do another surgery to fix the patch they put on the brain.  Does your daughter have a syrinx?  Mine is quite large which kept too much pressure and the patch leaked.  I actually had 2 seperate surgeries to finally get it fixed.  They had to put a small shunt in the syrinx to get the pressure off and then it finally healed.  Keep us posted to what is going on!  

[n40066]

i'm sure you've already thought of this, but are there any other drs. you can take your daughter to for another opinion?  it may very well be worth the travel if you have to!  i'll keep all of you in my prayers...

[selmaS]

Hi ..I am so sorry to hear ur DD is still having this issue....I have no words of wisdom right now, but will see what I can find out.

Keep her in bed with relaxing music and a cool damp coth over her eyes........I know this must be very diff....and am surprised her NS didn't offer some kind of help.

Hang in there
"selma"