First, hello to you all! And thank goodness I've found other people with hydrocephalus

I had a VP shunt fitted in 1993 after a subarrachnoid haemorrhage, and so far no revisions. Which is great.

BUT ... over the past 6 months or so I've had sore, tender areas along the track of the shunt tube, across my chest. Sometimes the sore patches are swollen, too.

First time this happened I was quietly panicking. My doctor sent me to see a lovely neurologist who didn't have a clue. Never heard about this before. Thought that it was probably local scarring that was getting inflamed. Just massage the areas, he said.

Well, the soreness went away.

And then it came back for a time. And again, and again.

There might be some connection with having infections like sore throats and sinusitis (which I get a lot).

Anyone had anything similar?

Sorry to be so late with this; I was out of town over the past week and just got back.

I'm so sorry you had to find out this way that neurologists are idiots about all things hydro. I also have a lifelong history of epilepsy, but I will never go to a neuro again; so help me God.

You said your doctor sent you to the neuro. Was it your GP? Please, if you're able, go straight to the nsg about it if you're really concerned. He is the only doc who will have any clue whatsoever.

I'm just a lifelong hydro patient of 40 years , but I know that shunt infection is extremely rare after about 6 mos following surgery, so it's probably not anything like that, but since your shunt is more than 10 years old, it may be the "beginning of the end," too. If you haven't been followed by a nsg in the past few years, find one now. You never know when you'll need one right away.


Good luck...

LIZARD

You know , I had that same thing couple months back , the pain along my tubeing in my head and chest ,, and i went to see my NS and he said sometimes you can get pains like that but with time it will go away..Said its just the tubeing trying to get comfortable lol ....but after a lil while it went away....although it is a sign of infection , but with that it is red around the area also ....
oh by the way , My name is Ginger , I am 26 yrs old , have had hydro since birth , around 80 surgeries plus other shunt related surgeries . I have a LP and VP shunt , Slit Ventricle Syndrome, and Epilepsy since age 2 been on meds for my whole life ..Just thought id tell ya what my doc told me...ttyl

Thanks for the responses!

Good to hear that it's not likely to be an infected shunt. But I don't fancy the idea of the thing coming to the end of its life. Such a whimp, aren't I?

I think that it's adhesions. Which I don't think is life-threatening. But it's a real pain.

Anyway, I've now told my GP that I need to see a neurosurgoen and she's making me an appointment. He probably won't have the faintest, either, but let's see!

Hi Millymax,
I also had a subarachnoid hemorrhage in 2004; had a bleed but docs never found out why. Hydrocephalus resulted so docs placed a VP shunt after two weeks in intensive care. A year ago, I had to have the shunt replaced because my head felt like it was going to explode. My doc told me to wait a few months to see if I felt better (this was after doing a pressure test on the line and determined that it had failed). I told them that I wanted the shunt replaced immediately (I got the programmable (Codman).

Has the neurosurgeon done a test on the shunt to see if you are draining? It may be clogged on the distal end (abdomen). If you have never had this done before, it is relatively painless (they insert a needle into the valve and measure pressure). My doc in Boston prefers not do the pressure test unless absolutely necessary.

Also, I noticed that if my clothing is too tight around my abdomen, I develop discomfort in the abdominal region though I have never had redness. I have read that swelling can indicate infection. Have they done a CBC (blood test to check white blood cell count)?

I apologize for being all over the board but there is so much to having a shunt and so little support both mentally and physically at the medical end.

I am chronically fatigued, are you? I can't seem to get through the day without a nap and always have a low energy level.

Hope some of this helps.
Patgab

Hi:

I have had a VA shunt for nearly 50 years now and went programmable in 2003. Since then I have been experiencing the same type of soreness from time to time. It can be a real bother at times. It has generally gone away in time. If it ever persists and causes any sever pain or symptoms similar to what shunt failur e feels like you need to see a Neurosurgeon and make sure that the shunt is functioning properly.
I have heard it mentioned that sometimes a warm cloth on the sore area can be of some help and in other cases a mild over the counter pain reliever like Tylenol can be of help
Hope this helps some of you.

Be well all

Mister (Junius in another life)

They can be quite rare as Lizard has mentioned and they sometimes happen after a shunt has been revised or upgraded. At other times they can hit like a bolt from the blue and have no known cause.

I was told in 2004(by my Neurosurgeon) that something as simple as a cut anywhere on the skin can lead to the blood getting infected and possibly leading to meningitis. I developed it more than a year after my programmable was placed and had 14 days of IV infusion to clear the iinfection and the shunt was replaced too to remove any potential for further infection.

Be mindful of the signs of meningitis and get help asap. The signs for meningits can be quite similar to those of a shunt failure. It can mean the difference in how you well you may be for the rest of your life.

Mister

hi I have a shunt as well and I have had this problem it is an infection in the shunt and your doctor should have givin you antibiotics, although I was put into the hospital and given intravenous antibiotics and they also had to drain the fluid out of me, they had to take the tube out and it would drain out of my side, I don't want to scare you but that's what happened to me, I am having alot of problems with it again my headaches are back, take care Terry

Hello Millymax
I have a vp shunt fitted in 1988 before a kelliod cyst removal so over all those years have had a no of times when the shunt tube feels like its sore but the doctors have sent me to a neuroloist for a scan at the local hospital to find nothing but the main reason for the contact was the tinitus it would seem to be a perminate issue with me woundering wether there is a conection
Graham

Hey
ive had a vp shunt fitted to drain my arachnoid cyst since 14 months old, I had this revised at 4 years old... This was brilliant and had no problems until 2 weeks ago, where my opthalmologist diagnosed me with papiladema behind my eye (on a routine check up at great ormond street hospital) I had no idea I had anything wrong with me I felt perfectly fine... Hadn't had a headache for weeks infact, I usually have headaches every other day so this caught me by surprise as this indicated pressure in my head damaging my optical nerves.

They had to try and measure this pressure in my head by inserting an intercranial pressure monitor for 48 hours... As CT scans did not show any evidence as such of any pressure.
i had this done, came round from the op fine, until hours after where it was hard to open my eyes, an exploding headache and constant vomiting... I then went into a coma state.
my pressure in my head measured 95 (typically 5-10 for a normal patient) and my bpm went to 35 (typically 100+)

I had an emergency shunt revision there and then, I woke up sore but no evidence of headache nausea blurred vision or anything. Perfect.

The next day I woke with a very noticable red track down my neck where my tube was... They said not to worry, I went home that day.

Came bk 5 days later for a check up, I explained I had an ongoing mild drowsy headache, I had Ct scan done (fine) && a shunt series xray. This showed up that my tubing in my stomach had uncoiled itself from my abdominal cavity, therefore I had my stomach reopened and the tubing was reimplanted into my abdominal cavity. Immediately after the op I had this checked but once again it done the same thing due to scar tissue damage from the operations done in the same place. I had this redone in a new incision and it worked. Now I'm fine && due to go on holiday in. 4hours!

I suggest you get checked for intercranial pressure no matter how well you may seem as the tube may of dislideged or coiled!! Good luck =D xx