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Vp shunt pain

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Unread 05-07-2011, 01:26 AM   #11
ericsangel
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Default vp shunt pain

Quote:
Originally Posted by jadiee-x View Post
hi, i have had a vp shunt for an arachnoid cyst i was 14 months old, it was then revised when i was 4 and i had no problems up until i was 16, apart form the few odd series of strenous headaches & sickness for about a year and a half.
On the 5th of september, i was admitted to great ormond street hospital after papilledema was discovered behind my right eye indicating intercranial pressure, that day i had an ICP tap inserted. i went into the op feeling absolutely fine, and i came out feeling just as well apart from the slight sting from where the wire was in my head. That evening i became very ill and had a very horrible headache, i became very irritable and was constantly being sick, there and then i got rushed down to theatre and had an emergency shunt revision after going into a comatose state.
After my op i came out feeling absolutely fine, no headache, no sickness...just a sore wound on my head and stomach. i got released two days after my op but continued to have a constant dull headache of the next five day until i came back for my post op check up. My headcahes should have resolved by now so i had a few scans and shunt series done confirming that my catheter in my stomach had spiralled form my peritoneal cavity. i was admitted once again and put into theatre about 2 hours later, where the opened up my previous scar and reinserted and repositioned the tube. An xray was done after my op and unfortunately the tube had done exactly the same once again and decided to spiral out due to scar tissue on a scar that had had surgery on so many times. so they operated the next morning and repositioned the tube about 2 inches below my previous scar.
Since that night of the operation i have had these dreadful stabbing pains in my lower abdomen...so far its been EVERYDAY for 53 days and counting.

Ive been back to GOSH, where they kept me in for 11 days doing numerous tests, ultrasounds, shunt tap procedure, stomach tap procedure, CT scans, Xrays and an MRI. The only thing they found was excess fluid in my abdomen due to my adhesions. the ultrasound showed this and also a collection of possible walled off ball of fluid (pseudocyst) on my RIGHT hand side by my hip. This is where my pain was hitting randomly during this time.
over the next few days the pain hovered around as it does and on the morning of my MRI scan, i got the pain on my left hand side. MRI showed that i had a cyst on my left hand side. this was put down to an ovarian cyst.
A general surgeon told my mum and myself that it couldnt be an ovarian cyst as i would be very tender in that area when he pushed against it, inwhich i wasnt.

neurosurgeons say the shunt is a red herring and not related to this pain...just seem strange that ive had the pain everyday without fail since the catheter was moved into a lower positioning in my abdomen.

They were discussing the possibility of the catheter irritating my abdomen and moving it to my left hand side of my stomach. but that plan went out the window after they found this 'cyst'. im now completely confused.

i have to see my GP and get referred to my local hospital for more tests to determine if that 'ovarian cyst' has gone and whether its actually one atall.(which i say must be the worst hospital possible!!)

i have to go back to GOSH in about 2-4 weeks for another ultrasound to see if the CSF fluid in my stomach has built up since my previous ultrasound. if so, this may detemrine the pain associated and they will have to cut out all my adhesions and do an exploratory op.

Is there anyone out there with the same problem?? (pain in lower abdomen from a vp shunt catheter surgery, like EVERY day since...intermittant random stabbing and slicing pains)

sorry its so long :|
thanks guys for reading
i have had the same pain as you are talking about. in fact i thought i had scoliosis as my body twisted along with my spine. the doctor said the spine is twisting from something else. the body i leaning towards the right the same side the shunt tubing is on. i believe when i lean to the right it keeps the pain at a level place. the doctor was pushing my body straight today and my abdominal pain is killing me along with my spine.im not sure if the only way to find out what is wrong is to have a laperoscopy. i found out ultrasounds and other tests don;t show anything.i swear after a while people think that we make these pains up. i know i like pain, im sure you do too. just a joke it i don't joke i''ll go crazy.............
take care helen
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Unread 06-23-2011, 01:20 AM   #12
ThirtyishHydroGuy
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Angry Me too!

Quote:
Originally Posted by ericsangel View Post
i have had the same pain as you are talking about. in fact i thought i had scoliosis as my body twisted along with my spine. the doctor said the spine is twisting from something else. the body i leaning towards the right the same side the shunt tubing is on. i believe when i lean to the right it keeps the pain at a level place. the doctor was pushing my body straight today and my abdominal pain is killing me along with my spine.im not sure if the only way to find out what is wrong is to have a laperoscopy. i found out ultrasounds and other tests don;t show anything.i swear after a while people think that we make these pains up. i know i like pain, im sure you do too. just a joke it i don't joke i''ll go crazy.............
take care helen
I had my shunt places when I was seven years old, and never had it revised until I was 32, but it's always made me a bit ill and suffer from headached. I have somewhat of this issue I think you're talking about... but a bit different. They supposedly put the shunt in with the same length catheter into everyone, so even if you're an adult who will no longer be growing you have the distal end of the catheter (which you would think would be handing in your belly) actually going down further into your pelvic. I started having some crazy testicular pain as well as just general pain down there. The doc sent me to every specialist for man troubles you could think of, nothing was found. It also seems there is not a consisten agreement amongst doctors. My neuro surg here in WA said it's because the distal end of the catheter is hitting nerves down there, but would not recommend surgery because it can open me up to infection, and I had an awful infection in 2009 after the revision of the shunt, with three more surgeries and another month in the hospital where I almost died... so not wantign to go that route again. But this pain, it can make it hard to walk, it can make it hard to sit still. If you're interested I can look online for you for the study that was found of the issue.... it supposedly only happens to two percecnt of all of us shunted people.
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Unread 07-25-2011, 07:53 PM   #13
imacnut
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Hi, I'd love a copy of that article you speak of.

Quote:
Originally Posted by ThirtyishHydroGuy View Post
I had my shunt places when I was seven years old, and never had it revised until I was 32, but it's always made me a bit ill and suffer from headached. I have somewhat of this issue I think you're talking about... but a bit different. They supposedly put the shunt in with the same length catheter into everyone, so even if you're an adult who will no longer be growing you have the distal end of the catheter (which you would think would be handing in your belly) actually going down further into your pelvic. I started having some crazy testicular pain as well as just general pain down there. The doc sent me to every specialist for man troubles you could think of, nothing was found. It also seems there is not a consisten agreement amongst doctors. My neuro surg here in WA said it's because the distal end of the catheter is hitting nerves down there, but would not recommend surgery because it can open me up to infection, and I had an awful infection in 2009 after the revision of the shunt, with three more surgeries and another month in the hospital where I almost died... so not wantign to go that route again. But this pain, it can make it hard to walk, it can make it hard to sit still. If you're interested I can look online for you for the study that was found of the issue.... it supposedly only happens to two percecnt of all of us shunted people.
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Unread 07-25-2011, 10:05 PM   #14
annakkro
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I would love to read the article as well.
Today I just had my second laparoscopy to move (and shorten this time) the shunt tubing out from under my diaphragm where it was wrapped and coiled causing severe left abdominal pain and left collar bone pain (referred pain) for the past 9 months. I don't know what the chances are of it staying put this time, but I know I am about ready to give up if it doesn't work. My neurosurgeon also says I am not a good candidate for any of the shunt conversions (VA, ventriculopleural).
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Unread 04-25-2012, 02:37 PM   #15
barbaracoffing
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Default Draining into Intestine?

Oh my gosh, I didn't know they could do this!!! Why didn't my neurosurgeon tell me this was an option and do this to me? I would reabsorb enough in my abdomen directly, and had pain too. I had 3 revisions in a month because I kept backing up with too much fluid and my valve and tubing kept leaking and detaching with my LP shunt. Last week they took the whole thing out and gave me a VP shunt and ran it through a new incision in my chest, but it is still peritoneal....I hope I won't have this problem again?????


Quote:
Originally Posted by Lulu8104 View Post
Hi Glittergirl and Jaidee-X

I was diagnosed with pseudotumor cerebri 5 years ago and(or intercranial hypertension ICP) 4.5 years ago. I underwent surgery to have a VP shunt placed. 2 months later, I was back for a revision surgery due to abdominal paid, which was very severe. It turned out that the drainage tube that ran to my abdomen was blocked, and they did a revision to have it draining into my intestines. This can cause some problems, like diarrhea when the pressure is up and the shunt is working really hard. I haven't had any shunt problems since. The revision surgery was relatively minor and only took me 2 weeks to fully recover from. I was actually up and about later that day and released form the hospital the next day. I felt much better after having the surgery done. Good luck and I wish you both a speedy recovery!
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Unread 04-25-2012, 02:38 PM   #16
barbaracoffing
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Default Pain

I agree. Thanks so much for posting. My doctor told me the same thing. I am so grateful to find answers!


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Originally Posted by Sweetnlo View Post
I am so glad you posted this thread...I too have been searching for answers to this aweful abdominal pain after having a VP Shunt placed 2 months ago. It is so severe that it stops me in my tracks wherever I am...even sensitive when I breath. I just went for a follow up with my doctor and he said it is probably the tubing irritating my abdomen. He pretty much told me I had to weigh the good for the bad...meaning it is either my brain or my stomach, and he would much rather seeing my brain functioning properly. It still doesn't fix this horrible pain though. OUCH!
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Unread 12-17-2012, 12:47 AM   #17
dtheo00
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My wife too has ascites build up in the peritoneum and her doctor advised that a VA Shunt has its own complications. We had drained about 4 litres of fluid by the doctors tapping out the fluid. Has your doctor advised off why there was ascites fluid, or nobody knows why? Also is the VA Shunt better, any complications?
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Unread 12-18-2012, 09:29 AM   #18
dtheo00
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Quote:
Originally Posted by jadiee-x View Post
hi cath,
Ive since found the cause of the problem, well an appropriate way of resolving the pain anyways.
im having my VP shunt converted to a VA shunt, my neurosurgeon spotted a build up of fluid in my abdomen (ascites) and this could have been what is causing the pain. Even if this is not what is causing the pain and it is infact the tube digging into the abdomen or organs, this will also resolve as the distal end will go into the heart instead of the peritoneum.
perhaps you could suggest this to your neurosurgeon too
will be happy to chat if you need to know anything.
I have also had a vp shunt when I was born and at 14 had it revised, now at 30 I have had a build up of Ascited fluid in my peritoneum cavity. We had to go see a fertility clinic where they are not sure if this fluid can damage the fallopian tubes. Has your doctor said anything of why there is a build up of Ascites fluid, as mine has no idea why I got it.
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Unread 03-24-2013, 03:42 PM   #19
lindacozz
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Unhappy son having pain...concerned!

Quote:
Originally Posted by jadiee-x View Post
hi cath,
Ive since found the cause of the problem, well an appropriate way of resolving the pain anyways.
im having my VP shunt converted to a VA shunt, my neurosurgeon spotted a build up of fluid in my abdomen (ascites) and this could have been what is causing the pain. Even if this is not what is causing the pain and it is infact the tube digging into the abdomen or organs, this will also resolve as the distal end will go into the heart instead of the peritoneum.
perhaps you could suggest this to your neurosurgeon too
will be happy to chat if you need to know anything.
Hi everyone-
My son is reporting consistent and uncomfortable stabbing-like pain in the area above his shunt incision in his abdomen. (He is 18 and has had shunt since age 1, several revisions over the years.) This is a new thing though...so we're concerned. No headache, fever (which is good) - but these posts make me wonder about a fluid cyst or a kink or deterioration of the tube or....?? Here is my question: will an xray of his abdomen (our hospital does these every few years, a "shunt series", head + stomach) show a cyst?? Or even a kink or the condition of the shunt tubing??

Thanks for any info you have. So excited to find this forum, so we may all help each other with 'real life' experience!!!
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Unread 06-19-2014, 02:42 PM   #20
catriona75
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Hey there,

I really appreciate your post. I had my shunt revised 11 days ago as it was blocked.
I have had severe stabbing abdominal pain immediately (like a day post op) and has returned. It is severe and intermittemt.
I am hopeful it will disappear as quickly as it came.
They treated me for constipation as that's what they thought it was and sent me home 2 days after the op.

I went to the doctor on Wednesday (2 days ago) for removal of the clips. He palpated my abdomen as I complained about tenderness, but it didnt affect the pain. Positioning is what affects the pain. He also tested me for a UTI which I do not have.

Am kinda glad other people have experieced severe stabbing (like your being knifed in the abdomen) type pain as it makes me feel less sad and isolated.

Am otherwise ok.


Trying to distract myself and get back into life so not overwhelmed.
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