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Old 01-01-2009, 09:02 PM #1
jenna1398 jenna1398 is offline
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Confused Shunt Pain

Hi everyone!
I'm so glad that I found this forum!

I have been suffering from pretty severe abdominal pain on my lower right side, which I have read about in a few posts. This has been going on for almost a year now and I've been to numerous drs who don't know what to do with me and ship me off to someone else.

I have a VP shunt which was placed in Feb 2003 after 2 previous ventriculostomies. I was diagnosed with acqueductal stenosis just before my 21st birthday...spent that one in the neurosurgeon's office. Fun fun! I had a ventriculostomy following my diagnosis in Feb 2000. It closed up and was redone in Feb 2002. Then my shunt was placed in '03. The pain just started in early 2008.

I've had a diagnostic laparoscopy done in September because the drs didn't know what else to do. CT scans didn't show any problems. But I had severe adhesions in the lower right quadrant of my abdominal cavity which were attached to my intestines and abdominal wall that had to be removed. The dr also removed my appendix because it was involved in the whole tangle, too. I was hoping that would be the end of the problem, but the pain is actually worse now. I'm assuming that the scar tissue was almost cushioning the distal end of my shunt and now it's poking me even more!

I'm at a loss of what to do. The neurosurgeon I saw recently (I've only seen him that one time) said he doesn't think the shunt has anything to do with it. But it's like I'm being stabbed internally! It's to the point that I sometimes can't walk, take deep breaths or pick up my 3 year old...I'm getting depressed over the whole thing, too, which of course makes things a million times worse. Any suggestions as what to try next? Thanks,

Jenn
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Old 02-22-2009, 03:47 AM #2
jeff179120 jeff179120 is offline
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jeff179120 jeff179120 is offline
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Quote:
Originally Posted by jenna1398 View Post
Hi everyone!
I'm so glad that I found this forum!

I have been suffering from pretty severe abdominal pain on my lower right side, which I have read about in a few posts. This has been going on for almost a year now and I've been to numerous drs who don't know what to do with me and ship me off to someone else.

I have a VP shunt which was placed in Feb 2003 after 2 previous ventriculostomies. I was diagnosed with acqueductal stenosis just before my 21st birthday...spent that one in the neurosurgeon's office. Fun fun! I had a ventriculostomy following my diagnosis in Feb 2000. It closed up and was redone in Feb 2002. Then my shunt was placed in '03. The pain just started in early 2008.

I've had a diagnostic laparoscopy done in September because the drs didn't know what else to do. CT scans didn't show any problems. But I had severe adhesions in the lower right quadrant of my abdominal cavity which were attached to my intestines and abdominal wall that had to be removed. The dr also removed my appendix because it was involved in the whole tangle, too. I was hoping that would be the end of the problem, but the pain is actually worse now. I'm assuming that the scar tissue was almost cushioning the distal end of my shunt and now it's poking me even more!

I'm at a loss of what to do. The neurosurgeon I saw recently (I've only seen him that one time) said he doesn't think the shunt has anything to do with it. But it's like I'm being stabbed internally! It's to the point that I sometimes can't walk, take deep breaths or pick up my 3 year old...I'm getting depressed over the whole thing, too, which of course makes things a million times worse. Any suggestions as what to try next? Thanks,

Jenn
I, too, suffered abdominal pain on the same side as you suggest, opposite to the side the shunt was placed in my head. The suggestion at the time, just a week or two ago, was that the distal end of my shunt may have been blocked. The way to discover this is by doing an ultrasound of the abdomen. I had that done and the X-ray tech said she could see no obstruction at the bottom end, but wouldn't rule out a blockage in the middle of my stomach somewhere. She said she couldn't tell, because to be truthful, I'm overweight at 300 lbs. and she just couldn't see past what she called "body mass". But for you, it might be worth having your doctor send you for an ultrasound of the abdomen. It's a very painless and non evasive test. I didn't even need a hospital gown. They simply probed the area of the distal end, which I was surprised to find was way over by my right hip and not at the end of the incision. So, if I were you, I'd get the ultrasound and go from there.
Jeff
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Old 02-23-2009, 05:59 PM #3
jadiee-x jadiee-x is offline
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Hi i suggest an ultrasound also.
The least painful procedure, as theres no pain at all, just a little pressure =)

I too had this stabbing pain, well i still do infact, for another 4 days anyways =| hopefully.

When i had my ultrasound it showed that i had a fluid build up which was larger than its suppose to be, i got this on my right side, in my lower abdomen. It takes your breath away doesn't it, you get scared to breathe and its feels that you are being sliced.
I had that quite alot, but my fluid build up has gone down a bit now compared to what it was. But im still getting pain, but i feel as if this is a different pain to the build up. This pain i get feels that its the end of the tube trying to stick out of me as its in my pelvic region in between my hips. This ive been getting EVERY day since my distal end was inserted lower than a previous incision in a distal revision due to migration. My last revision was in SEPTEMBER! its now the end of FEB! So it could well be down to the catheter irritating.

There is them two possibilites, but it may also be down to adhesions, scar tissue.

My neurosurgeon has tested me for infection of the peritoneum which came back clear after having an abdominal aspiration, which was a needle, a big needle at that that punctures through all the layers of your body to get into the fluid in your cavity to test the CSF. Which may also be a test which you should undergo for infection.
I must say the first time i had it done, it was over in 10/15 mins, start to finish including prep and clean up. The second time i had it done, it was the worst experience of my life, its done under local anesthetic. You cant imagine the pain it causes, there is resistance to each layer in your body, skin, muscles, peritoneum, cavity and the fluid and other layers, each layer can be felt being punctured. On the second go this was done so so many times over as they couldnt get to the fluid due to bowel movement, they had to make a small incision to get a bigger needle in, i came out of it traumatised, seriously.
So if you have it done, have it under GENERAL ANESTHETIC!!

Well anyways, my neurosurgeon now has me down for a conversion of my VP to a VA, where the catheter will go into my heart instead of the abdomen.
This should stop the fluid build up and also the irritation of the tube. It wont help with adhesional pain, so im hoping the pain is being caused by either the fluid or catheter!!!

Good luck!!!
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