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

aboutHi , 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.

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

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

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.

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.

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.

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

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.

Thank you
 

And I agree with the headaches. Stomach is still hurting, just hope it doesn't last much longer

I was thrilled to find this site. My daughter Bethany, who has hydrocephalus due to a dandy walker cyst is having these same pains in her abdomen. Originally she only had pain every now and then on the right side. She had a shunt revision in February and the pains have intensified and have moved to the left side as well, radiating across the abdominal area and around her belly button. Her primary doctor has had ultrasounds done to check her gall bladder and appendix as well as X-rays. They have all been normal.
This is her second revision. Her last was at 5 years of age. She is now 28. When she eats her stomach hurts worse. She is not sleeping at night because of the pain. She also has to pee every hour. Her primary doctor gave her Zoloft said she is depressed and this is why she has these pains. I wouldn't let her take the Zoloft. Also she is having pain at the back of the head where the neck meets and around her valve site.
Her neuro says she's fine just going to have to give her body time to adjust. It's been 5 months since surgery. How long does it take for adjustment??


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Hey Sharon, "...How long does it take for adjustment?? ..." I'm sorry to say but that is a bit like asking "how long is a piece of string?"
Personally I have had 5 surgeries and each has taken longer and longer to settle and recover from. I am not a very patient man when it comes to pain and I tend to push myself harder than I should, which in the long run doesn't help as I pay for it in pain later. My idea was to build up stamina to get myself back to work but that has not happened. My last surgery was Sept '13, so this time around I'm almost 2yrs post surgery and the dr's have told me that this is about as good as its going to get, which is very frustrating, disappointing and down right annoying.
I am not surprised by the dr's responses as I have been there too. They do their scans, take their pictures and do their tests. If nothing shows then they point at the patient "...its a psychological issue... ...here, take these..." It wasn't until I collapsed that things were investigated despite the fact that there were many signs prior that were written off by the medical fraternity. And although there is a documented history of all of this over the years, still they return to a psychological cause. Now, I investigate each and every medication they give me prior to taking it. I have been put on all sorts of meds from high dose opiates to high dose tranquilizers, heart meds to epilepsy meds and, of course, the psych meds. They all screw with me in some way and some of the side effects are just bloody awful.
I have now decided I need to manage this the best way for me, not them. I do use opiates but at a low dose, by staying low if I have the need I can increase to manage better if my pain has increased. So for me its all a case of 'pain management' for now. My wife will often tell me to take something as she can see my discomfort/pain as I do 'try' to keep them to a minimum. Sometimes not very successfully, but I 'try'
Don't get me wrong, I still maintain the appointments with the neuro's and other specialists and I do follow their advise (my wife makes sure of that:)) but I also investigate, keep myself as fully informed as I can. I'm seeing an independent neurologist as well as the hospital's surgeon. I'm attending a pain management clinic to better manage all this for me
I made an appointment with an investigating physician prior to one surgery. The physician looked into EVERYTHING. This turned out to be a very good thing as he found an unrelated issue that I was unaware of at the time. So this may be another option, have somebody new take a look for another opinion.
If you are not getting the answers you want then get another dr, get another opinion. Unfortunately the neuro community is fairly small so trying to obtain a truly independent opinion can be difficult. But don't give up hope, it can be done.

Merl1n

Thanks Merlin. I did get her in to see the neurosurgeon who diagnosed her 28 years ago. I've been trying for 2 months. They finally listened to me. She is having an MRI Tuesday to show from Brain Stem to Cervical Spine. Once that is complete I pray we get some better answers than we've been given.
I guess every person is different after revision so my question about adjustment time was off base. The neuro who performed her last revision kept telling me she'll adjust, just give it time. But didn't give her any sort of possible time frame. He also told her you don't have Dandy Walker, without an MRI evaluation. The Neuro we recently saw said you can't see her cyst without completing an MRI so now I'm questioning the one who recently revised her shunt. You're right the neuro community is very small so we are at their mercy. They don't really know the pain levels in people nor the weird feelings they have in their bodies so they just want to put a bandaid on the problem rather than helping find and truly fix the problem.
Thanks for responding back. I'll let you know how things go after the MRI and the follow up appointment with the neuro.

Sharon


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Oohhhh hell, I could not agree more with this statement. The amount of 'fun and games' I've with these so called 'medical professionals' annoys me to the extreme. It was once said to me "we know, we understand pain" but understanding and having to manage such pain are two totally different things. I also had a nurse ask me to give her a pain rating out of 10. I said 15, as I lay on a bed clutching my head in agony post surgery. "Ohh it can't be that bad" she said. So I told her to lay on the floor and I'd kick her in the head. "There's no need to be so offensive" she told me, to which I replied "Then stop making stupid bloody statements when you can see that I'm in agony".
As for the 'weird feelings', I have a plethora of these from tingles to sweats to numbness etc and when Dr's can't name or label the cause they use a fallback position of "It must be you..." ie its psychological "...here take a tablet"
I have in the past openly questioned drs about the surgeries being the cause, but I'd STRONGLY recommend not doing this as they become instantly defensive.
Conflicting diagnosis' are not unusual. I presently have a neurologist who I have seen 8 times and have been given 5 different diagnosis' by him. It was explained to me by a fellow patient like this: They treat the body like a manmade machine, where they 'fix' an individual component. Broken component, replace the component. But this ain't a replaceable component, so they treat known symptoms (where they can) then blame the machine when the fix doesn't work.
I do truly hope/wish/pray that all goes well with your daughters appointment, that the scan is completed. And that they can find a cause and solution. But please don't lose heart if they can not (I make that sound easy. HA. It is not) but keep trying to find answers for yourselves

Merl1n

So I told you I'd give you an update after our MRI and follow up.
Well, she does not have Dandy Walker Syndrome any longer she out grew it so the neurosurgeon said. But they were looking for Arnold Chiaria malformation due to her symptoms. Well her cerebellar tonsils are oblongated and have gone through the hole in the skull where the spinal cord comes through to the brain. I can't remember their length at this moment. She has scoliosis and many other of the symptoms that go hand in hand with CM but the neuro said I'm not diagnosing her with that. He suggested we go back to the neurologist we had seen and that he would send his findings over to him.
The neurologist put her on amatriptyline( spelling) to be taken at night before bed. Insomnia is another symptom of CM as well as bladder control which she has problems with peeing, sometimes 40 times a day.
She does have straight hydrocephalus but now it's not caused by a dandy Walker cyst, so we're back to finding out if she does now have Chiaria Malformation and finding treatment for that.


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Abdominal and shoulder pain after VP shunt
 

I had my VP shunt 5 years ago in 2012 - only just found this site.
I had immediate and total relief from all the symptoms of the hydrocephalus that had developed as a complication of my acoustic neuroma but from day 1 after surgery I started getting intense abdominal cramps on and off- but several times a day to start with- like being stabbed. I am sure it was the CSF causing irritation because the location of the pain was directly related to my body position and where the liquid would drain to - so if I was standing or sitting I would be 'stabbed' upwards from my bowel or bladder area, if I lay down on my side the stabbing was under my ribs on the side I was lying on. I also had a very intense stabbing in my left shoulder which I believe is referred pain from diaphragm irritation. It can't be the end of the shunt tube as it moves around so much. I mentioned this on my first follow up appointment but wasn't taken seriously- they had never heard of this apparently. I'm pleased to report that the frequency of the cramp/stabbing reduced after a few months but I still get the shoulder pain once or twice a week and the abdominal stabbing pain perhaps once every 2-3 weeks. I am fit and well otherwise and can put up with it but for the few minutes it lasts it is totally intense and distracting. Has anyone else had this and have they ever had an explanation? Thanks

Yes I have. I had a VP shunt installed just oved a month ago. I have experienced very severe stabbing pain at times and, like you, depending on position. My neuro believes it is the tube rubbing up against various areas.
It is good to know it has subsided some for you as this is really hard to live with - it's difficult to go anywhere or make plans if I'm not sure I can do so and not have a pain attack.
I don't know of any other reason for this and neuro had no other explanation as everything looks good on the scans. Absolutely excellent neuro team by the way.
I can only hope both our journeys are made a little easier by less pain less often.

Abdominal pains
 

I had a bur hole done oct 2016. That failed and had a VIP shunt placed on the left side on Valentine’s Day 2017. The min I woke up from my second surgery I’ve had SEVERE side pains. Sometimes it’s on the left, sometimes it’s in the right. Mainly the left side. I have been to every doctor you can think of with no help. I can barely walk when they are in full force. Anyone else ever find any relief or what the heck I can do!? Thanks!!!

Any suggestions would be greatly appreciated!!

Hello Michick21 and welcome to NeuroTalk
I made the edit you required to your first post on this thread.

We would also suggest making your own thread as more are likely to see and respond then.

I’m not sure how to do that :(

To start a NEW THREAD..... enter the Forum you wish to post to and look near the top and bottom left of the page where you will see the NEW THREAD button, click, type and submit.

VP shunt pain
 

Hi everyone,

This is my first post here.

I have been experiencing sharp pains in my shoulders, chest and sides since I had a second VP shunt fitted, after 11 years with my first, in March. I find that a heat pad helps a lot, though the pain is worse when I am working for a long time at a desk.


I'm wondering if anyone can recommend any particular sitting positions that could help with the pain while I'm at school. I am in my last year of A-Levels, but can be distracted from my studies by this.


Holly

I have pelvic pain and abdominal pain following a shunt replacement and a suprapubuc Cath.

In July I had a them look around inside with a camera.. they removed some scar tissue, but the pain largely didn’t change- except for severe pain on the lower right side before gm.