Lp shunt migration pain

[ketrump]

I have an Lp shunt for Psudotumor cerebri, 1st on 5/98 revision 1/01. I had lap band surgery 11/07 and have lost 25 lbs.4 days ago after being on the ecliptical I noticed that i was getting stabbed in my abdomen by my shunt.This happens off & on but always resolves on its own. This is getting worse not beter. I called my neurosurgon whose office said to come right in for a consult for a revision. I said I didn't want surgery, as my weight is still dropping. they called back & said i needed to get a KUB x-ray so i ran over & had one taken, I work in the hospital ER. later i went over & talked to the radiologist who looked at the x-ray with me. he said that my shunt had moved since last x-ray. I told hit it felt like i was being stabbed by a knife in my right side. my pain is right over the right pelvis across from my navel. the exact spot where the distal end is. i later read my report & it states non specific gas pattern, no obstruction, 2 catheters in perontneal cavity, looks like post for gastrotomety tube. i'm concerned that something is being damaged, like my organs as this is a 7-8 on a pain scale every time i move. I also have to put external pressure on my abdomin when i move. any ideas. Oh I have tried to jiggle, shake vibrate, bounce the catheter loose, to no avail.

[MrsAllison]

My LP shunt OP was 16 Nov 12. Since then I have had intermittent, migrating, incredibly intense pain in my lower abdomen and pelvic region. Sometimes a dull, constant 3/10 and sometimes a stabbing, wrenching 9/10 - and everything in between. Three doctors, five nurses and two surgeons later - no explanation.

Thank god for our various online IIH communities. After doing my own research I've come across many, many stories which closely match my own. Some have been referred for revision surgery. Some, like me, have been brushed off.

For my own point, my pain is worse after wearing fitted trousers - anything that isn't pyjamas or for fitness. It is worse if I've had a large meal and is almost unbearable if I have any sort of digestive discomfort (TMI?). As you can imagine, carrying on with my normal life is quite difficult these days - I'm not the sort of girl who goes out in public in her pyjamas.

I find myself avoiding social commitments and even skipping meals simply to get a break from the near-constant pain. It's getting out of hand.

I had this operation to get my life back. But I'm so terribly sad now. My headaches have (thankfully) mostly gone, and my vision has improved, but part of me thinks I would have reconsidered the operation if I had known what pain was in store for me.

Sorry, that sounds terribly depressing. Don't get me wrong, I am much happier post-OP. I really am. I just wish I had known about this abdominal pain issue beforehand. With how common it seems to be among us shunt folks, it really should be more widely acknowledged as a side effect of the operation. Something more widely accepted post operatively and something that has a plan of action.

I hope you are all experiencing a miraculous recovery from IIH and any other pains you may have.

Stay well.
X
Allison from Glasgow, Scotland.

[cruzcagirl]

is anyone on permanent disability for this/  i had a vp shunt in March 2012 and it was removed and a lp shunt placed in Aug 2012,, still have major headaches and intense pain in abdomen where shunt drains,, i cant live like this , drs say nothing is wrong, feel like im going crazy,, help

[cruzcagirl]

i have the same pain since my lp shunt was placed, its unbearable at times mking me feel week and dizzy, the hospital has run tests and says im fine i know im not HELP

[Fefe53]

Thank you for posting this because I just had a LP SHunt put in 12/11 and have had pain since the  surgery and this week had the most intense pain in my life Stabbing pain and also had to hold the site .Would like to know if this is my body trying to reject the shunt or what?

[jadiee_x]

hi, i had vp shunt revision 3 weeks ago, 5 days later i had my distal end of my shunt reinserted due to migration form the peritoneal cavity, i was unaware of this and had no pain, just a dull ongoign headache which i thought was normal after brain surgery.
the attempt to reinsert the tube was useless as it got rejected from the peritoneal once again, so the next day it was inserted into a new incision lower down my abdomen.
since that operation i have had horrible sharp shooting pains, they come randomly and are not constant but when they start they can lasted upto an hour on and off and then come back later unexpectantly.

as im on holiday currently i cant go to great ormond street and enquire about this so all i can do is look up opinions on here and neurotalk communities. i have seen many people complaining of the same pains, including those with rectal pains, inwhich im getting too as well as the abdomnal pains like stabbing form the inside. they have all been given responses suggesting its the distal end of the tube poking inside and hitting on nerves. ive seen this maybe about 20 times now, so im guessing thats what my pain is, maybe yours too??
the hispital can do surgery to help this if it dont subside, like shortne the tube, move the tube to otherside of the abdomen or convert the shunt to a VA shunt where the tube goes inot the right atrium of the heart instead of the peritoneal.

hope you find out what going on, best of luck =D x