Hello there I am brand new to this forum and am so relieved to find so many other hydrocephalics I could cry.
I have a twenty three year old daughter who was thirteen weeks premature and shunted at six weeks old due to a bleed in the brain.She then was diagnosed with a posterior fossa cyst at five years old and a y connector was fitted to deal with that problem.My daughter has been in hospital for five weeks on Thursday,although three weeks previous to that she had an exploratory operation as her shunt seemed to be malfunctioning as she was having nausea,and headache when she awoke and pain killers did not help,she chose the op over an ICP as she cannot bare it when they take it out(you would think in this day and age they would do it under anesthetic).It must be bad if she chose an operation over it.THEY DID NOT FIND ANYTHING,AND SAID HER SCAN WAS FINE SO SENT US HOME.
Three weeks later I had to take her up with acute shunt failure,again nothing showed on scans,and they left Laura screaming in agony for nine days,even morphine injections did not shift it,we asked for the ICP on the Sunday and they left her for another four days,and put it in on the Thursday afternoon.When they checked it on the Friday morning it showed extremely high inter cranial pressure,and took her to operate,they said they would find the problem.in between my daughter screaming all this time I told them this had all happened before when she was seven and that it was her peritoneal end that was not working,but that they did not find it until they opened her up,was told they would see it at the top,I said they said that the last time but still they did not find it until op,all they said was we have taken on board what you have said(in one ear and out the other in other words).They said her valve was not working properly and put a new one in,but told laura that they changed her valve in case it was that(who knows if it was broken or they were hoping it was that)She was ok for a day and a half then her symptoms started again,they said she was adjusting to the new valve(in twenty three years Laura has never had to adjust to a new valve)she is usually out of hospital in three days.they left her another two weeks in varying degrees of pain,she was still on morphine,tramadol,paracetamol,ibuprofen,Imigran(do es not take migraines)then her neuro went on holiday and another came back from holiday thank goodness.After x-rays,ultra sounds,another ICP,but no mention of an MRI, Laura`s neuro had found nothing.The new neuro took her to theatre to check the whole system,once again I mentioned the tummy probs,and the fact that the y connector for her cyst had been there for nineteen years and could not be seen on scan`s.
Four hours in the operating room.,and the neuro came up and told us that the y connector was fractured and that her tummy end was not working properly either.I am so angry,all the pain and frustration Laura had been through,and the torment and worry of the whole family and for four weeks this was not picked up by a team of experts.Laura had a whole new system fitted,but they could not take the part that goes in to the ventricle out as it had been there since she was six weeks old and could have caused another bleed to the brain,so the new one is right beside it.I am concerned though as she is getting pain behind her eye on the opposite side of her surgery and in that ear,also her neck at opposite end to the surgery.I gave her a massage as I thought it would maybe be stress of the op and favoring that side,as they had to cut through muscle on the other side to get to the y connector and she cannot move that side yet,when I ran my finger up her neck just slightly,hardly touching her(just below the scull at top of neck)she shouted out outch!it was very tender indeed to touch,very weird as it is no where near her op site,thought maybe damaged verve endings or something as when one side of the brain is damaged the effects are on the opposite side.Her neuro is giving her another scan tomorrow saying it is just routine,but only since she heard these symptoms,and she had a scan on friday after her op.Sorry this is so long winded,but I cannot believe I have found people who actually understand what I am talking about and going through,Laura will adore this site when she get`s home will never get her off of it LOL.Has anyone else been through similar,am I panicking over nothing maybe,It has been so up and down over the past weeks I just do not want to relax yet and I won`t until Laura is home and past the six month infection date.Laura has had many revisions before but this time is one of the worst if not the worst yet.Thanks for listening everyone.audreyrose.XX

Hello, im so sorry to hear what your daughter has been through, must be dreadful!!
I had my shunt removed on the 19th june, placed with an external shunt and then on 22nd i had a first try craniotomy and continuous fenestration of the cyst after so many shunt problems since last September.
3 weeks later, the fenestration failed and had an external drain put back in, 6days later i had my shunt put back in.

I must say my hospital (great ormond street) are absolutely fantastic when it comes to getting things sorted as soon as i show any shunt malfunction symptoms, my scans have NEVER showed up anything, even when comatose with VERY high pressure. Ive never had to wait when ive showed acute symptoms like extreme headaches/vomiting/light sensitivity etc, everything always been done on the spot.

The pain you mentioned after touching your daughters neck, i say, is perfectly normal. I know after my shunt revision I was very tender down my neck, its due to the catheter being threaded under the skin, I was very tender for days. I hope that reassures you and i sincerely hope your daughter feels much better real soon