aloo
i had my latest revision at great ormond street on 8th of september 08, this was totally unexpected, 2 days earlier i was diagnosed with papilledema on normal check up with my opthamologist at GOSH, i had been feeling aboslutely fine, i hadnt had a problem with my shunt pain wise or headache, i hadnt had a headache in weeks, which is very rare!! so having intercranial pressure was a big shock, so i were fitted with an ICP the next day but after the op, well a few hours after, i went into a comatose state and stopped responding and heart rate went incredibly low to 35 BPM. i was rushed into an emergency revision of the entire shunt, apparently the pressure in my head was so high when they drilled into my head, my nurse witnessed fluid pulse out of my head and across the theatre, surgeons had to move aside.
i have 2 further revision over the next week on the distal end due to migration.

since these ops ive had nothing but problems!!
the tube inside my is irritating causing such horrible pain in my lower abdomen, fluid in my stomach is building up. therefore im due to have my shunt converted to a VA shunt.
my vision in one eye is dreadful compared to how it was, its now double vision at a certain distance.
my closed eye balance is now dreadful, the day before the op, i had no problems with any of these things atall.
also i keep geeting a thumping pain down my shunt valve behind my ear.
also when i get this pain, at time i get a thumping pain in the back of my head near my neck in the same area each time. (my cyst is at the front of my head, so this is not it)
and another thing, i keep getting thumping pain in my lower spine!

ive never experienced this before, ive had a vp shunt for 16 years now since i was 1, and ive never had these problems, they are since my newest shunt was fitted.

where my scar is on my head, i can dig my finger nails into it and i cant feel it atall! it makes me feel sick though, because its so strange that there is no feeling there!
not that i tend to dig my finger nails into my shunt!

its just i dont like mentioning this stuff to my doctors incase they thinks im being a hypochondriac. its just one thing after the after now and seems like its never ending

Hi Jadiee-X,

I'm so glad that I found this forum and people who are experiencing similar issues! I completely understand what you mean about drs thinking you're a hypochondriac. I think I'm at that stage myself. I've been to a bunch of different drs lately and no one seems to know what the issue is...they just pass me on to the next!

I'm having the abdominal pain issue, too. It's been happening for almost a year now that I get sharp stabbing pains in my lower right abdominal area. I've been to my family dr who sent me to the Ob/gyn to make sure there were no issues there. Then to a general surgeon. Had a diagnostic laparoscopy in September where he found extensive adhesions throughout that area of my abdominal cavity. Removed my appendix because that was involved and had to dissect all the scar tissue from my intestines and abdominal wall. We were hoping that the pain would go away after the adhesions were removed...it got worse!

So on to a neurosurgeon. He doesn't think it's from my shunt. I do. It feels like I'm being stabbed from the inside. Sometimes I can't even walk or take a deep breath. Many times I can't pick up my 3 year old...

I am at a loss as to what to do next! How did you get the dr to figure out the shunt was the issue?

Jenn

hi jenna.
every test possible was done on me, i spent 10 days in hospital having all tests done.
Ultrasound
MRI on my belly
Shunt reservior tap to test for infection
Abdominal Tap to test for infection
CT to see the brain side was fine
Shunt series to see that everything was connected

Before these tests they were contemplating on there being either an infection, pseudocysts forming, irritation from the distal end.
from these the only things that were noted was excess fluid in my peritoneum.
And also an ovarian cyst, therefore nothing could be done for 4 weeks until i had another ultrasound to see if the ovarian cyst was still there, which is wasnt but i was still gettin pain everyday, ever since the actual night that my distal end was moved further down.

Also they were thinking it could be scar tissue and adhesions as you mentioned, but removing them could also lead to them coming back as they are caused when the stomach is operated on. which is silly really.

My doctors and professors all said that the shunt may be a 'red herring' and seems like its not the cause of the pain, but i darent mention all these posts i seen with exact problems, as they would think ive read into too much.

but luckily they offered me the choice of having a VA shunt converted from my VP, so any problem down there should disappear if its to do with the shunt.

good luck x

Hey Jaidee, I'm sorry you've had such a rough time! Have you had a nuclear medicine shuntogram test done? It's where they insert radiation(or some radio active dye) into the shunt at the reservior. My neuro also presses really hard at my valve(for about 15 secs) then to make sure the dye goes up into the ventricles. But anyways, it flows through the shunt track to check the flow. During this time, (over maybe a 30 mins period or so) x-rays are taking pictures to monitor it. I was having issues in october(headaches, throwing up) and had the typical tests done(CT of head and shunt series) and nothing showed up. My neuro however is awesome and knows me well enough at this point to know when I complain there is a problem so he kept digging and after doing the nuclear medicine test he saw where the flow was obstructed. It ended up being a broken valve. But that test has been used to find my problems a few times.

hi melissa, ive never heard of one, i think that may well be the one test i havent had done. :P
Well i guess if they suggest one, i know what to expect now so thank you

...oh, and with your shunt valve...the pump part, is that the bulb part?
im really confused with it all, with my old shunt i had a little squishy part on the straight part behind my ear.
with my new shunt it doesnt have that, and ive heard that the bulb, the reservior can be used as the pump, but it barely seems pressable, its just a hard lump.
the structure of my new shunt feels so strange compared to my old one, my old one felt like its was all one part, this one feels like it stops and starts, lumps rising and falling