LP shunt and severe abdominal / pelvic pain

[The_beat_goes_on]

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.

[selmaS]

  Hi lea and welcome to the Chiari forum

You may want to create a new thread as this is an older thread and my  be overlooked by the current members,

If there us any way I can help you navigate the site let me know.

[Lealieb]

hi, I had a revision of my LP Shunt done in December 2013.  For the past couple of days I've had horrible pains all along the path of the shunt?  Has anyone ever experienced something like this.  My Neuro is quite far from me so not easy to get to.

[The_beat_goes_on]

an update for anyone else experiencing abdominal / pelvic issues due to shunt tubing -- MINE WERE IMMEDIATELY RELIEVED AFTER WAKING UP FROM SURGERY.  Shortening the catheter and stitching it behind my liver.  I was able to pee in PEACE and continue to have no pain at all from the tubing.  Don't let any doctor make you feel like you cannot experience pain from the "benign" silicone tubing.  It was a very easy fix.

[soccero]

Hi! Im sorry I never had an LP shunt I had Vp shunt mine has been disconnected from my ventricle but the tubbing is still in me and mine bothers me from time to time but it usually passes with in a few days. if it gets really bad a hot bath and then a warm pack while i sleep can be helpful. hope that helps! praying for you!
Molly

[zygy2]

When I had my LP shunt I had a ton of pain and they found it was wedged between the bladder and the uterus ( I believe) and it was so painful. It drove me completely crazy with pain and they kept saying that it couldn't be the shunt that was causing the pain.  It took quite a while to get them to do a scan and look at it! Once they shortened it, it was much better but I still hated the shunt and always felt like I could feel it even though they told me I should not be able to.  At least the crazy pain was gone when they shortened it!  I eventually had it removed! -Zygy

[selmaS]

  Thanks for the update...praying all goes well and this helps how u feel with this shunt <3

[The_beat_goes_on]

just an update to this -- My neurosurgeon has referred me to a general surgeon to have my shunt revised laproscopically -- shortened and moved OFF my bladder.  It seems to have settled lying across my bladder and is really bothering me.  Apparently I'm "hypersensitive" ... to this shunt.  

[selmaS]

  I actually thought the opposite, that those with pain for long periods of time were better able to adapt to pain....deal with it better then those that do not have chronic pain....it makes us stronger in that sense...so if u r having pain like that it is not bcuz y r more sensitive, and I do not feel it is acceptable at all!!

Pain is ur body's way to say something is wrong....get ur Dr to listen...or find one that will.

[Ball123]

I have no idea about this but for sure this can not be acceptable.
I mean, come on, there must be something they can do.

[The_beat_goes_on]

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.

[selmaS]

  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.

[The_beat_goes_on]

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?

[selmaS]

  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....

[The_beat_goes_on]

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.

[selmaS]

  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,