Vp shunt pain
 

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):confused:

sorry its so long :| :eek:
thanks guys for reading :grouphug:

Same problem
 

Hi Jadiee-x. I was just looking thru google to find an answer to my problem and I found your site and post.I have the very same problem!I had my shut surgery done on the 25th of Nov. A VP shunt for IIH.I have no problem from the head or stomach wounds just the pain in my side. I was rushed to hospital Monday by ambulance because they thought I was bleeding internally. I wasnt but they still couldnt tell what or where the pain came from.I would love to talk to you about it all if you have the time.I do hope you are feeling better.Cath278.

Hey Jaidee, I had a big problem with pseudocysts back in 2006. I had had two surgeries in two months. One to place a programmable valve(in August) and another about 2 weeks later cause that valve was faulty(September). Anyways, over the next couple of months I had severe stomach pain. I was hospitalized in October when a pseudocyst in my stomach became infected. They drained the cyst and I went home but the pain only stayed a way for a short time before it was back. I went through December and the end of the year keeping a heating pad on my stomach almost 24/7 due to the pain. In January I had another pseudocyst drained(that was what was causing all the pain). My neurosurgeon decided that the scar tissue in my stomach (due to the 2 shunt surgeries I had had on my stomach because of the VP shunt) was the cause of all the pseudocysts. He said it was a problem that would continue to occur over and over and decided that the best course of action was to move my shunt from my stomach to the pleural cavity(around the lungs). I haven't had any stomach pain since he did that in January of 2007. Its been around a month so you may already know what was causing your stomach pain, but if you haven't its something to ask your doctor about! ~Melissa~

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 the SAME PAIN!!!
 

Hello-
I have had a vpshunt put in 6 months ago. ever since then I have had problems after problems especially in the belly area- I have been to hospital to hospital ,cat scan after cat scan ,test after test and NO ONE can figure out why I have this HORRIBLE stomach pain. It would go away for a while then out of the clear blue come back in full force- so bad I cant even walk! It too is right where my scar is from my surgery. I am now not dealing with the stomach pain but now I have HORRIBLE headaches that last for up to 7 days constant then gone- So if its not my stomach bothering me its now a headache- they did ALL sorts of tests thinking it was even infected- but ThankGod that is NOT the case. I got this surgery thinking I would be better-and since surgery all i have been is sick sick sick:( I am soooo fusterated:mad:and I don't know what else to do-please let me know what happens with you-Thanks & take care*

hi glittergirl,
i found my answer,
infact im in hospital now!!
i had my operation yesterday afternoon for a VA shunt.
im yet to have any abdominal discomfort atall!!! =D which is great.

it wasnt a big operation either, the shunt itself wasnt changed, just the tubing was diverted. the tube was pulled out from my belly and put into an artery in my neck which lead to my heart, so ive now got 2 incisions on my neck, would normally be one but i dont know what happened to wake up with two?:confused:

Ive just had a chest xray to make sure the tubing is where its suppose to be, if it is then i'm allowed to go home already =)

I suggest you ask your Neurosurgeon about the possibility of a shunt conversion, as it seems to have the answers ive been looking for after suffering 6 months from abdominal pain.

Since my shunt surgery in september i have had nothing but problems too, but i guess we need to take things steps at a time to eliminate things bit by bit, but this absence of abdominal pain is great! =D

Hope you find your answers soon hun =) xo

Same thing happened to me
 

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!

:winky: My first surgery was an aspiration of a colloid cyst of the Third Ventricle of the Brain. Two yeas later, still having hydrocephalus, They installed a VP Shunt. That was back in 1987. For 23 years I went thru pain .Went to many Doctors trying to find out what was wrong.In October of 2009 I was hospitalized for open heart surgery. Well they found my Aortic valve was failing. Had an As sending Aortic Aneurysm, an also needed a triple by pass.While I went thru the dozens or so of MRI's an CT's. Now at 53 the heart problem was enough. But no while doing a scan of the brain. They found I was over shunting. So after goin to a neurosurgeon .He looked at my scans, an said he could not see anything wrong. Two weeks later went to the hospital for extreme dizziness,and loss of vision in right eye. After another CT they found my ventricle was smaller than last time. So this time I went back to the same clinic, But asked for another doctor this time. A new vp shunt an still pain. I am at the point of giving up. It is like the Doctors are to busy to see someone who might really sick

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!

my son had a vp shunt that became infected and due to the scar tissue it was converted into a va shunt. He didn't have any problems but because he was only one, he outgrew it- a va shunt has to be lengthened periodically if you have not finished growing because the tube has to be a specific length- they can't place extra tubing in your heart.:wink: because he was prone to infection, we were also concerned about it getting infected again and it going to his heart. At his last revision, they switched it back to his belly and so far so good. I would think that for an adult a va shunt would b fine. We just couldn't bear the thought of multiple surgeries as he got older.

vp shunt pain
 

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

Me too!
 

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.

Hi, I'd love a copy of that article you speak of.

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).

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?????

Pain
 

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

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?

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.

son having pain...concerned!
 

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!!!

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.

explanation for recurring MILD abdominal pain
 

I had a VP shunt placed over a year ago. Since then I have peritoneal pain localized where the shunt drains whenever it drains much. I am getting used to it and now kind of welcome the pain because it means my shunt is draining and my symptoms get better (poor gait and foggy thinking) again. The pain is similar to what I had with ruptured ovarian cysts and I believe it is irritation of the lining of the peritoneum that causes it. I do fear I am developing adhesions, but don't know any way to avoid that.

My problem is a recent sudden onset of pain shooting along the length of where I know the catheter goes beginning in my head and coinciding with my pulse. It is better when I am upright and I am trying to hydrate, but it is a new symptom and I am worried it might signal infection.

If anyone has experienced this, please tell me what happened.