Hi to everybody
From most of the information I have found regarding hydro there seems to be very little on adult hydro. I was 24 when they first found I had hydro and had surgery to have a shunt inserted the same year. Things were going 'OK' until this year.
I have had 3 surgeries this year and things are still far from good. The dr's believe they have fixed the problem, I beg to differ. I was having pain prior to my first op at age 24 but was told everything from growing pains to hypochondria. Even to the point of being institutionalised 'cos there is just no way he could be in that amount of pain, so he must be nuts'. Then one day I'm driving down the road and the lights went out, couldn't see. Pulled up called the wife and went to emergency, where they did a scan and found a nasty growing in my head. It seems this thing is deep within the brain and not safe to remove, it is putting pressure on the aquaduct and therefore causing hydro. After my first operation I tried to get answers, none were forthcoming. I learnt how to manage my pain ie medication, rest, meditation, physiotherapy and I feel I was doing as I say "OK".
But since the end of January things have been bad, very bad and oh my god. None of my previous management tools are working. In between surgeries I returned to work, but after the latest operation in August I have not been able to. My only hope is that the operation in August was to place a variable valve in the shunt line to try and regulate the pressures and that it is these pressures that are causing the immense pain. Here's hoping.

As I say Ive seen lots of info from parents of kids with Hydro and from people who were diagnosed as babies/newborns, but are there many/any who were adults when hydro was diagnosed??

I have been diagnosed at 29 but haven't been able to yet find a doctor who is well informed with hydrocephalus or able to tell me what plan of action they want to take. I am having a cisternogram next week to see if there is a blockage. But I do have to travel because my area doesn't have one single neurosurgeon that does brain. Nor are any of the neurologists familiar with hydrocephalus. They all say it's not common for my age.

My symptoms were migraines, double vision and numbness in my face.

I do hope that you find some relief soon.

Hey Ennairb,
Thanks for the reply, I too have found that it has been difficult to obtain information regarding adult onset as it is not that common, hence my question. I'm not that far (now) from a capital city where a neurosurgeon and neurologist are available, but I have not received any great answers to my questions from them as it seems that Hydro can have a number of causes and therefore a number of symptoms depending on the location of the blockage.
As for my pain, I don't call them migraines. Just very intense headaches that seem to radiate from a massive pressure behind my eyes. I too have vision problems and facial numbness. One of the dr's told me that migraines are related to blood flow within the brain. He put me on all sorts of migraine medications, none of which were of benefit. My problem is not due to blood flow but the fact that there is a nasty growing in my head blocking the natural flow of CSF and building up pressure. They placed a VP shunt which fractured (or broke), so they inserted a new one but left the broken one in my head, so now I have two tubes in my brain. I have tried to query if this could be the cause of my intense debilitating pain and was accused of attempting to obtain a financial benefit by accusing them of malpractice, which is not my aim at all. I'm only looking for answers and not blame. The way I look at it is, if they didn't operate in the first case, I'd be dead. So there is no blame from me.
If you are lucky enough to find a good neuro try to keep them as I found good ones are hard to find.

I saw a dr yesterday who told me that this is about as good as it will get and that I may never be able to return to work, which I am more than disappointed about.

I hope your tests provide you with a bit more information and that your situation can be resolved or at the very least, your symptoms alleviated. My only real advice is not to get your expectations too high, as I did and came crashing back down to the reality of my situation. If you go in with the idea that they may not be able to do anything, then anything they maybe able to do could be a bonus.

Good luck with it all
Merl1n

Hi my name is Roy. I have arnold chiari malformation. I had the decompression surgery the end of 2012. From that I got an infection so they went back in and scrubbed out the infection. In the past six months or so I started having a bunch of new symptoms, and my neurosurgeon thinks that I have pockets of fluid on my brain. I'm pending an MRI to be approved. My calves and the back of my arms are locked up all the time, I have blued and double vision, fatigue, nausea and vomiting, clumsiness, severe migraines, and now seizures ( which I have never had before). Does it sound like hydrocephalus to anyone? I'm going crazy because everything is taking so long to be approved, and in the meantime I'm just laying here feeling like crap 24/7. Does anyone have any advise for me please?

I was diagnosed with hydrocephalus at age 41. I was driving down a highway and the road started to spin. I went to hospital, was flown by air ambulance to Toronto. I declined to have surgery then, but a week or so later I was back and they did the surgery. I went back to work for six years, but then it just became too hard. I'm almost 59 now and things aren't perfect, but I'm able to live on my own with only over-the-counter pain meds. I do get some simple seizures, but just live through them. I've sang in 12 stage shows, just recently completed a movie and travel to concerts and sporting events on my own. I can't work anymore, but I'm enjoying the early retirement.

As someone who has had 6 shunt related surgeries since 2009, I can relate to all you have been through and my heart goes out to you. Since I was a baby when I was diagnosed, my hydrocephalus was considered congenital, in part because diagnosing me with acquired hydrocephalus had potential ramifications against the doctor that delivered me (that is a whole other story and issue) but my neurosurgeon told me last year that it was likely due to the massive hematoma I received due to my traumatic and difficult birth. I had almost no problems throughout childhood, except for 2 uncomplicated revisions at age 4 and 18, my hydro roller coaster started at age 29 and I'm still on it :roll eyes:

My point is I have learned that not enough is known about how the brain works or how different systems interact within the body to really figure out what is going on when people with hydrocephalus have problems. For example, I think my current symptoms, polydipsia (extremely thirsty), polyuria (have to go the BR all the time), dry mouth, inconsistent fatigue, dizziness, nausea, occasional problems with focus, coordination are related to my pituitary/hypothalamus being out of whack due to the change in ICP to 'normal' when I was given a programmable shunt in 2009 then lost 85lbs. For those that don't know, your pituitary/hypothalamus works on a negative feedback loop, sort of like Central Air or Heat in a house, so I think my A/C is functioning like it still cools a 1800 sq ft house when now cools a 1000 square foot house. The problem is all the usual indicators of hormonal problems, TSH, CMP, are within normal range, so my primary care doctor was like "we are all tired".

Thankfully I have a friend who is an extremely intelligent doctor who helped me to problem solve the issue and recommended I send a bunch of my very detailed knowledgable questions to my neurosurgeon before my appointment so that he can be more prepared to answer my questions and also recommended I check to see how much sodium I have been eating to see if that is throwing off the numbers, i.e. I may be taking in so much sodium that my levels are normal.

The reason for this posting is basically to say don't stop asking questions and if you are concerned about something not being right, then the doctor should at least explain to you WHY you shouldn't be concerned, and if the answer doesn't sound right then get a second opinion. If the answer is "I don't know" then that at least is a place to start and the goal would be to figure out how you and your doctor can work together to find the answer.

Good luck!

Hey Meg,
Thanks for the reply. I totally agree that not enough is known in regard to the interactions within the body. I've been back to see my NS who has agreed to do another scan, but I'm not expecting any great miracle answers. I know that things are not right but my regular doctor reads the reports and repeats it back to me (as if I cant read it for myself.) I take my wife to the appointments as I often wonder if the medicos even believe me. She is the only one who sees my in the morning and evening, when my pain is worst. So she tells them. The Dr has however sent me to another Neurologist. The neurologist wants to inject me full of Botox. My understanding is that Botox has been beneficial for some people suffering with migraines and I do not believe my pain is migraine related. I have a nasty growing in my head, that's the cause and not migraines. I have previously tried migraine treatments with little to no benefit but that was prior to surgery, so maybe things have changed. I DON'T KNOW.
I'm frustrated as all hell. I haven't been able to return to work and I'm not getting any real answers from the dr's, despite the fact that I have been asking questions and researching for myself. "keep taking painkillers" ain't an answer IMHO

Thanks again
Merl1n