Experience of Abdominal Pain in VP Shunt

NPH survivor · 08-13-2013, 06:30 AM

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Quote:

Originally Posted by darren2175

Hi

My first post here on the site.

Had my last shunt inserted 7 years ago and have had daily severe abdominal pain everyday since then. Have had lots of scans and x-ray's all of which said everything was okay. Been to a pain clinic for 2 years and tried everything going. Even had my nerves cauterized (not sure if this is the right description of what the procedure was but it was something like this.

My neuro left me with the decision as to whether or not I want more surgery to try and alleviate the problem but said that there was a high chance I could be left in more pain. The last operation I had they made mistake and instead of removing some shunt tubing they actually extended it and it now runs down one side of my body and across my stomach to the other side. I have multiple pain points across my abdomen.

My reason for posting today is that I'm looking for any advice from anyone that may have/had similar issues. I'm thinking I have reached a point where I'm going to opt for surgery again in the hope of alleviating these issues.

I can't sleep well, can't eat a lot and generally can't do much without the pain interrupting my life! I asked for a VA shunt (the same as I had for 26 years with no issues) and the neuro said he doesn't like doing them in adults. Not sure if this is something I can insist or not?

Thanks for reading my long post.

Darren

Hi , I too experience the same pain you are describing . I had a V/P shunt for 3 years and was miserable every day A new neurosurgeon removed the shunt and put in a endoscopic third ventriculostomy . It worked well and NO PAIN at all. it was redone due to scar tissue forming and just last week a V/p shunt was reimplanted. I already am having back the stabbing pains all the time. He said he thinks I do not tolerate the catheter because of the meningitis I had as a child. I have read that the catheter can be moved to empty into the pleural cavity and te heart. to relieve this pain. I think I will check into this as having a so called 'normal" life with this constant pain does not appear attainable.

jordantheheadcase · 09-05-2013, 08:05 AM

Hi, I'm new on here but I've had hydrocephalus for 13 years (I'm now 39). I had bad problems with the stabbing abdominal pains with my last shunt; the tubing kept digging into my diaphragm so it killed when I breathed in! The problem resolved when I had a shunt revision (for a different problem) and the whole shunt was changed; my surgeon just made sure the abdominal tubing wasn't too long this time and I've had no issue. My first shunt was a VA shunt and I never had a problem with it. It's your body and you absolutely have a right to ask for an alternative if the current treatment isn't working for you; you're the one who has to live with it after all! You could see if he could try shortening the tubing in the abdomen and see if that works first? The trouble with this problem is that it won't necessarily show a problem on an x-ray. An ultrasound can show if it's digging into another internal organ (as mine was). But neurosurgeons really should know that scans/x-rays don't always reveal the answer when it comes to problematic shunts! Good luck with it. x

darren2175 · 10-14-2013, 10:53 AM

Thanks for the replies.

The neuro mentioned endoscopic third ventriculostomy to me and I had hope for a short time that this was going to happen, after my full history was reviewed the neuro said no and this was due to the position of the cyst that caused the hydro when I was a baby.

Don't know about anyone else but I visualize sometimes just ripping it out myself when the pain is bad. I would never do this of course, but the image comes into my head when I'm so frustrated with it all.

Hopefully will see the neuro soon and get something done.

Darren

CNAJACLYN · 08-06-2014, 11:08 PM

Hi Jordan,
I'm new here and I just had my shunt revised for the 7th time! I'm getting those stabbing pains that you spoke of! I get them when I breathe in and out. How long did it take for your shunt to find a "home" and the pain stopped. I've been taking pain meds since the surgery. I get my sutures out on the 11th and I plan on telling my neurosurgeon about the pain .
This is a new placement for me because before that shunt for 34 years of my life was behind my right ear and now it's on the top of my head. I was having too many headaches and shunt site pain with it behind my ear. This time he finally decided to move it. I'm grateful, but I truly hope this stabbing pain goes away soon. This has been the roughest recovery yet. Any advice would be great. Thanks.

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