Anyone have any experience with Hydrocepalus?

[charlotteb24]

My OH has been diagnosed with Hydrocephalus which he has probably been living with for years without knowing anything about however he has now become very symptomatic and is awaiting an appointment to see a neurosurgeon at a specialist hospital to have a stent put into his brain to control the build up of excess spinal fluid away.

As is he i am feeling very worried about it and apparently most people with hydrocephalus are diagnosed as a child and stents fitted so he is a bit of a medical wonder lol!

Has anyone here living with hydrocepalus that could help to just put my mind a rest a bit?

 

[LandN]

Hi charlotteb24.. I havent got hydrocepalus but I have something similar called IIH (idiopathic intracranial hypertension) build up of csf.. There are diffrences though be tween the two.. I found out in 2010 when I started going blind and having crushing headaches, I was refered to sheffield where I got a vp shunt fitted. I cant really say much about hydrocepalus as I dont know alot about it.. But didnt want to read and run. I hope your oh has a healthy recovery after he gets his stent fitted.

 

[bellabelle]

I have something similar to it which is IIH, I have a vp shunt in my brain.. I also have met many people throughout my stays on the neuro surgery ward with hydrocephalus.. If you wish to chat pm me x

 

[Abz1982]

My OH had it. It was diagnosed at 16 when he nearly went blind from the pressure build up in his head. They cannot say WHEN he developed it, but it was not from birth and they think he may have developed a mild case of meningitus that went un noticed but effected the spinal chord drainage.

It hasn't affect OH - well other than he pees like a race horse due to the increased fluid going through his system, and he hates the scars being touched (head, neck and tummy).

He is passed medically fit for everything - the only thing it stopped him doing was joining the army, although the neuro surgeon was more than happy for him to go and do that.

LandN & bellabelle, could you explain more on the diffs between IIH and Hydrocephalus? As your descriptions sound more like what my OH has, but he was diagnosed with Hydrocephalus.

 

[LandN]

Hi Abz1982 just seen your post on here now.

I think Hydrocehalus and IIH are basically the same thing both problems with obstruction to the flow of CSF. I think the diffrence is that those with Hydrocehalus their brains develop large ventricles and those with IIH tend to have small ventricles. Usually they know a cause for Hydrocehalus were as IIH is more an unknown cause. Its quite confusing the diffrence between the two and i really dont understand what makes them both diffrent problems other than the venticles but some people have been diagnosed with both HY and IIH but thats another puzzle all together. I might ask my neurosurgen next time i see him

 

[mandy_grovie1]

My little brother has hydrocephalus and was diagnosed as a baby with it. He hasn't had any major problems except not being able to play sports and having a little bit of a bigger head He's seen one of the best neurologists in the world, Ben Carson, for his hydrocephalus. As long as it's monitored it really is not something to constantly worry about. My brother has lived a happy and normal life as I'm sure your OH will! Worrying and stressing about it will only make it worse!