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Chiari Malformation Community
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4760166 tn?1398360913

LP shunt and severe abdominal / pelvic pain

Hi guys,

This is a question for anyone who has a shunt catheter in their peritoneal cavity.  On the 17th of last month (April) I had a lumbar shunt placed for IIH/hydrocephalus.  My headaches immediately resolved.  But now I'm left with what feels like a runner's stitch and a charlie horse combined in my lower left abdomen.  It's a stabbing, cramping pain.  I went to the ER ten days out and they did a CT scan.  I am adding the results to this post ... And a photo of a flagged image from the scan to my photo album.   They prescribed an antibiotic and tomorrow I take my last dose, and the pain has not lessened at all.  What does "sterile postoperative seroma VERSUS early abscess" mean.  Versus? does that mean it could be abscessed?

My question is has anyone had similar pain?  I'm taking a muscle relaxer and norco and it BARELY takes the edge off.  My surgeon thinks it might settle.  I am basically an invalid at the moment, stuck to my heating pad.  Heat helps slightly, but this pain cannot be normal.  It's also torture to pee.  It feels like something stabbing my bladder.  I've had blood work and urinalysis / both normal. I've read that CSF can be an irritant? and cause pain?  any ideas?  I don't want to jump into another surgery but if I could rip this catheter out myself I would.  My NS didn't even want to discuss treatment options yet.  

thanks in advance for any information you could give me.
15 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi...I do not have a shunt, but u can talk with zygy2 or soccero on this .

As for the seroma, that is a fluid filled cyst, that could be post op or it can be an abscess.

I have heard others that had issues with where the shunt ends or drains to....sorry I can not add more,

Hoping u feel better soon,
4760166 tn?1398360913
Do they have shunts?

I've been reading other forums and apparently this is a common issue, only mine is more frequent, almost constant.  Some people feel it for YEARS and their surgeons dismiss them.  At least Dr Kim admits that this is related to the catheter / tubing but should be temporary.  I talked to one of the nurses yesterday and she blamed it on me being thin and able to feel every little movement (cop out!)  they've added flexeril to my plethora of meds, and I have noticed a small difference but not enough.  They want me to wait another two weeks and hope things settle.  It will be a long two weeks.
620923 tn?1452919248
COMMUNITY LEADER

  Yes they do....or had them,....not sure if Molly's were removed....my memory sticks...(thanks Chiari).....but they have experience with them.

  In my reading issues like this I feel (not a medical professional) the issue is due to EDS...and since u were not  yet DX'd it may come back to that....

So many with EDS and shunts have issues....
4760166 tn?1398360913
how are you diagnosed with that?  I read that I'd have to see a geneticist?  Dr Kim mentioned it as possible -- one of the reasons is I make hypertrophic scars.  I also have some stretch marks (*****!)  and I never had a real growth spurt, never lost or gained any significant amount of weight.  

How were you diagnosed?
620923 tn?1452919248
COMMUNITY LEADER

  The Dr I was referred to is a geneticist but a rheumatoid Dr should be able to see u and do a clinical exam as well as ask questions and see how many points u have of the Beighton Score...that is more for those that are hypermobile, but many of us are....

My Chiari specialist also checks for EDS b4 they do surgery....I scored 7 out of 9....all u need is 2 out of 9 to be considered an EDSer.

I also have blue sclara, and a hiatal hernia, as well as an umbilical cord hernia....my skin is very soft.....and I have issues with mal absorption and med issues.

4760166 tn?1398360913
Dr Kim thinks that I am someone who is just more sensitive to pain, and wanted me to give it another month.  Saying it's too soon to remove it.  I got it down to two weeks, but even surviving the weekend seems impossible, and it's just an office visit in two weeks, not any kind of solution to whats going on.

I'm kind of shell shocked.  I had chronic pain for longer than I haven't (15+years) so maybe acute pain does register as a little more catastrophic for me?  the big problem is it's not staying in one spot, it moves, so it's not something I can get used to.  I am using a heating pad and hot water bottle so often that my skin on my abdomen is actually MOTTLED.

I can't believe that this is acceptable.  There has been absolutely no improvement, so waiting and waiting and waiting doesn't make sense.  I don't know what I'm waiting for.  I don't know what to do.
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