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Experience of Abdominal Pain in VP Shunt

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Old 08-09-2013, 02:51 PM   #1
darren2175
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Default Experience of Abdominal Pain in VP Shunt

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
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Old 08-13-2013, 06:30 AM   #2
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Quote:
Originally Posted by darren2175 View Post
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.
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Old 09-05-2013, 08:05 AM   #3
jordantheheadcase
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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
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Old 10-14-2013, 10:53 AM   #4
darren2175
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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
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Old 03-21-2014, 03:01 AM   #5
Phillyeaglefan2004
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Quote:
Originally Posted by darren2175 View Post
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 had my vp shunt installed in October 2012 and from the time I woke up I had abdominal pain, which was sharp stabbing type pain and the surgeon sent me home and to the urologist as the pain was like my bladder was being stabbed and of course he said "did you have the pain last week before the surgery?" and I of course said no and he told me "why would it be anything other than the shunt" and I also have had many scans, shunt x-ray studies and every time I had an x-ray the tubing end was at the position of my pain. I was told many times that the tubing was like spaghetti and could not cause pain. In October of 2013 my shunt was revised and the tubing shortened to try to help and for a few months the pain went away but now it is back and worse than ever. It is now causing pain in my right diaphragm and it hurts to even breathe. I was sent this time to a GI doctor and he said the same thing that it was the shunt.

I also have had three times between the first vp shunt surgery and now when my shunt showed signs of failure/plugging, severe headaches, vision problems, ears ringing/thrumming, severe memory problems, writing letters out of order in words, finding myself waking up doing crazy things like filling a basket with ice, hurting to move my head even slightly like brushing my teeth, etc. My neurosurgeon seems to not want to accept that the shunt is causing this problem. I told him I do not have x-ray vision yet can pinpoint the tubing end every time and this has been at least six to eight x-ray scans and cats scans. The doctor has never even pressed on my stomach or belly, EVER, which to me just seems crazy and more for deniability than doing a good exam. Call me crazy but I think if a patient comes in repeatedly for stabbing pain you would press and see if the pain corresponded to the tubing in the x-rays and cat scans but that is just me. I just want relief from the pain. I am hoping you have had a resolution to your pain. I am thinking some sort of allergy to the tubing material or auto-immune response yet that is just me guessing and hoping to find a reason and way to stop the pain and failures after everything I have tried and researched. I cannot sleep and it feels like a piece of broken glass inside and every time I move or breathe it feels like that is stabbing and poking inside. I feel for everyone having the same type of issues. I have given this more than enough time and hope someone has some advice or direction.
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Old 08-06-2014, 11:08 PM   #6
CNAJACLYN
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Frown 7th Shunt revision!

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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Old 04-06-2015, 04:26 AM   #7
Nancy S.
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Default severe abdominal pain

Hi,
I had a VP Shunt put in a little over a week ago. Within hours I was having sharp pains in my lower abdomen. Then yesterday I started hurting in my right side and now it's clear across my stomach. It hurts to breathe move etc. I can't get comfortable or sleep. If anyone has any answers for me please help. This is my first surgery. Thanks in advance.
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Old 04-06-2015, 09:42 AM   #8
Merl1n
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Originally Posted by Nancy S. View Post
Hi,
I had a VP Shunt put in a little over a week ago. Within hours I was having sharp pains in my lower abdomen. Then yesterday I started hurting in my right side and now it's clear across my stomach. It hurts to breathe move etc. I can't get comfortable or sleep. If anyone has any answers for me please help. This is my first surgery. Thanks in advance.
Hey Nancy,
You say a little over a week ago. When I first had my inserted it took a month for things to settle in my abdomen and the headaches were just beyond belief. In having a VP shunt inserted things have been disturbed from your head to your belly or the whole shunt train, the whole length. It's going to need time to settle a bit.
When I was first fitted with the shunt I had awful gut pain, I put it down to the medications they had me on. When I queried I was told'...its your body adjusting...' After a month I could still feel it but it was settling or I was getting used to it, but initially, it was awful bad. As I say, it took a good month for me to adjust. So give it a bit of time.
I'm about to write something and you may not like it and if my wife saw me writing it she would laugh at me, as I was less than happy when people said it to me, BUT.....
.... %^&*$ &^*(^ you've just had major brain surgery, don't be rushing it, things will get back to normal. BUT you have to give it time...
Now, I can write this out and laugh, but when I got out of hospital I wanted to get straight back into it and I pushed myself to do so, I went back to work. This was the worst thing I could have done, I didn't give myself time to adjust, time to acclimatise and 3 month later and I was in hospital again, having further surgery. My friends and family were the ones telling me 'not to rush it' and I kept telling them all ok, when it wasn't. I'm paying dearly for that now. So give ya self time.
Initially for me it was the headaches that messed me up, for me they took months and months to settle. Long after the abdominal pain had settled
Now everybody is different and if you still have major questions or worries, go see your GP or Neurosurgeon. Only you will know when things are right or wrong. Go see ya dr if you're unsure
Merl1n
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Old 04-06-2015, 10:33 PM   #9
pogo
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My daughter has a shunt and started having abdominal pain years later... But her abdominal pain as she reported it wasn't from the shunt, it was a focal seizure (one of a few different kinds she gets - now we know they are seizures). There are lots of ways things can go wonky.
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Old 04-13-2015, 06:07 PM   #10
Nancy S.
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Quote:
Originally Posted by Merl1n View Post
Hey Nancy,
You say a little over a week ago. When I first had my inserted it took a month for things to settle in my abdomen and the headaches were just beyond belief. In having a VP shunt inserted things have been disturbed from your head to your belly or the whole shunt train, the whole length. It's going to need time to settle a bit.
When I was first fitted with the shunt I had awful gut pain, I put it down to the medications they had me on. When I queried I was told'...its your body adjusting...' After a month I could still feel it but it was settling or I was getting used to it, but initially, it was awful bad. As I say, it took a good month for me to adjust. So give it a bit of time.
I'm about to write something and you may not like it and if my wife saw me writing it she would laugh at me, as I was less than happy when people said it to me, BUT.....
.... %^&*$ &^*(^ you've just had major brain surgery, don't be rushing it, things will get back to normal. BUT you have to give it time...
Now, I can write this out and laugh, but when I got out of hospital I wanted to get straight back into it and I pushed myself to do so, I went back to work. This was the worst thing I could have done, I didn't give myself time to adjust, time to acclimatise and 3 month later and I was in hospital again, having further surgery. My friends and family were the ones telling me 'not to rush it' and I kept telling them all ok, when it wasn't. I'm paying dearly for that now. So give ya self time.
Initially for me it was the headaches that messed me up, for me they took months and months to settle. Long after the abdominal pain had settled
Now everybody is different and if you still have major questions or worries, go see your GP or Neurosurgeon. Only you will know when things are right or wrong. Go see ya dr if you're unsure
Merl1n
And I agree with the headaches. Stomach is still hurting, just hope it doesn't last much longer
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