Hey all. Im 24 years old and have Hydrocephalus. I've had it all my life apparently but was not diagnosed and treated until my late 20s, in fdact I spent my 21st b'day in hospital.
Wen I was 22 I was back in having a shunt replacement as apparently the shunt was not working and never did.
Since the replacement Ive been back and forth to my doctor because Im over paranoid my shunt will stop working again, or it will get infected or blocked.
Right now though Im experiencing pains in my head where my regulator is, Ive had neck pains which have now gone and on occasions for a short time the tube of my shunt feels sensitive at the back of my head.
Does anyone else get as paranoid as me, or does anyone else experience the same problems?
Also, someone pulled a hat down on my head, quite hard, the other day (before I was experiencing these pains) and held it down for a few seconds. Can this effect my shunt? Or am I worrying and thinking about it too much which is why Im getting the pains?
Thank you for reading/ur help,

Liam

Hi Liam

Shunts are actually quite durable things - it takes A LOT to actually damage one. I have never had to have a replacement due to damage to the shunt. As for a shunt blockage, the usual first signs for me are vomitting and nausea, and then a very distinct "pounding" headache in my forehead that gradually (but quickly) gets worse.

I have had a shunt for 35 years, and I find the only way to live a remotely "normal" life, is to not even think about it. Of course you still know that it is there, but don't let it consume your every waking moment !

Nat.

Cheers Nat. Im finding it hard to ignore any pains I get either in the head or stomach, the slightest ones are enough to make me worry. Also Im not seeing my consultant because he's signed me off which worries me because its not my local hospital and I have to either go through my GP or through the closest hospital before I can be operated on should something go wrong and it takes a while.
Its good to hear people like you who still get on with life as normal. After my shunt was discovered to be faulty last year I've been trying to live like everydays could be my last, but when you plan something to happen far in the future is when the paranoia comes in worse than ever.
Thank you again for your advice, I'll try and keep a positive mind

Liam

Hey, Liam.

Listen to Gnatty. What's probably happening is pressure change. Everyone has them; we're just often more sensitive to them, so your valve is probably just saying, "Dang...gotta work harder!" thereby irritating the neighboring nerves. This is very normal, albeit irritating and does not ,indicate that your shunt is on the blink. If you notice other symptoms that persist, though, tell your nsg right away. (Chance of shunt infection more than a couple months after surgery is almost nil, so that should be at the very bottom of the list, if it makes it at all. )

As for the jack@$$ who jerked the hat onto your head, I hope you kicked him in his manhood! It's unlikely to harm the shunt, but it can give you a headache you wouldn't soon forget, as you may have found out yourself. Make sure to let your nsg know if you have any symptoms after injuring the valve, too, especially if it's programmable. Though unlikely, it may re-set.

LIZARD

I guess it's easy for those of us who have had shunts almost from day one to be a bit more relaxed about the whole thing, but I think if I had one put in later in life as you have, I would probably be a nervous wreck too ! But as I said, the symptoms of a severe problem with the shunt are usually quite obvious, so if you don't have these problems, I think things will be O.K. I have pains in my stomach quite regularly from the shunt too, but I have grown used to them (I know that might come as a surprise after 35 years ;!) and because I know what they are, I don't worry about them.

Nat.

hi nat.
my name is caroline call me caz.
i had hydro sence birth.

i cannot say i am what you call relaxed about having a shunt i all ways getting worried when i get pain

hope that you are ok now.

cazzie

Hi Caz

Really the only time I get worried about my shunt is when I get the very obvious headache PLUS vomiting I described in my previous post. After having 6 revisions it is very obvious for me when this is occurring. Also, the symptoms almost always first occur very early in the morning. I guess the pressure builds more when you are lying down all night.

How many revisions have you had Caz? It is usually with experience (unfortunately ) that you learn which "aches and pains" you really have to take notice of.

Nat.

Just wanted to saay a huge thank you to the ppl who repled to my post, sory i havent been on here a while.
My headaches r starting to go now and an eye test has shown no signs of water behind my eyes. My balance is fine and all is well.

Thank you all for ur support

Hi Nat
I will have my shunt for many years since 87 with only a few visits to hospital with headache probs but still the same old shunt and i work in the building industry but dont lift heavy items few headaches but apart from that all as is any other person (maybe a few more jobs because of memory) Good luck
Graham

hi, everyone. I don't know if I posted this but I just thought I'd get some input on this. I've been having shunt problems lately. I've been put through the wringer siince about April 1st. Went to the hospital having intense headaches on the valve area in the right back side of my head. They did a shunt series but bould not do a right hand side view because I was to shaky during the exam. Later they took a CT. CT revealed that the shunt is disconnected at the point of skull entry. I remember one time during this year that I was laying down in bed. and the heard a crack and it began to hurt near the shunt valve. Anyway, I told my nsg, and he said it is not disconnected I'm still having pains from it and have had a seizure in June or July of 2008. went to St. Louis for a second opinion. The ER doc compared their CT with the one from the 1st of APril and asked me about being diagnosed with Dandy-Walker. I said no, He said a cyst was there in the brain on the CT from the previous hospital and then went to compare it with theirs, but they changed shifts.Neuro resident came in and treaated me like a hypochondriac. said my ventricles are OK and shunt is working. 4 doctors at the hospital said that the shunt is no longer connected or working and my brain is like hydrocephalus is not there. Anyway,This shunt has been in Since 10/88 and distal catheter was reviised since in 2002. Any suggestiions? I'm at wit's end. CPS took my little girl because of this and a judge has ordered me to get something done but no one will do anything to help. Shunt pains get worse and fluid is leaking from the shunt area down the neck.


Sorry foor the long post and