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Old 05-28-2017, 08:16 AM   #1
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Join Date: May 2017
Location: Spain
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Default Hydrocephalus

I'm new to this and can't spell for toffee so please excuse any mistakes...
I'm a 62 year old female.
Three years ago I was diagnosed with NPH. I had been feeling some what strange for quit a long time (Years in-fact ) but noticed things to be getting....how can I put it! A little scary...
I have always had to get up in the night for a wee but I found this was becoming more frequent like 3 or 4 times a night and for about 6 months I found my legs feeling not quit right when I got out of bed to walk to the bathroom, it felt as though my calf muscles had shrunk and I was walking on my toes and leaning forward at the same time? It was a wired feeling but i self diagnosed it as tendon trouble and started doing daily stretching exercises to try to solve the problem.
But it didn't help, my husband was always telling me to stand up strait but As much as I tried I would always end up leaning forward walking on my toes again!
I have had two Lumba spine surgery,s for herniated disk problems so he put it down to back pain making me walk strange but As time went on other stuff started to happen.
I started getting the most awful headaches that would last up to 16 hours at a time and would absolootly floor me but I put them down to megrains as my mother suffered from them so I guessed I just took after her and put up with it, ibuprofen and paracetamol had no effect nether did proscription megrain drugs.
Then I started getting moments of losing my balance and actually falling over.
We have a style at the end of our garden that goes into a small aria where we keep chickens, normally I would climb over it with ease but I started to find myself having to hold on to it to steady myself as I was wobbling all over the place twice finding myself laying on the ground looking up at the sky and wondering what the .... was going on with me!
This change was creeping up on me but I was still functioning and getting through my daily tasks until one day I was driving my car and I suddenly forgot what to do with the foot peddles! I didn't know which one to put my foot on it only lasted for probably about 4 seconds but it frightened the life out of me!
Then I started to forger stuff like I'd put keys down and minuets later wouldn't remember where they were...(most people will relate to that one) but this was happening to me about 6 times a day!
I made an appointment and went to see a neurologist who after speaking to me for five minuets said he didn't think their was much wrong with me other than an unorganized brain! I told him I didn't feel right so he said ok' I'll book you in for a brain scan just to put your mind at rest, he then told me to try reading and doing crosswords to exercise my brain box and go back in about January as he was away on his Christmas holidays and wouldn't be back till then. This was the beginning of November time and seeing as he WAS the expert I came away from the clinic feeling I was over reacting and making a mountain out of nothing, I did go ahead with the brain scan and guessed (something I Seem to do rather a lot of) that if any thing sinister came up on the scan the clinic would call and inform me. In the mean time I carried on with my strange problems through Christmas and into the new year then at the end of January I went to see my rheumatologist (who works incidentally at the same clinic) for another problem, when I went into her office she was sitting at her desk looking at my brain scan results! She told me to make an appointment to go see my neurologist asap as their was some thing seriously not quit right going on in my head?
I looked on the monitor and could see what looked like a big black butterfly right in the middle of my brain....
I got an appointment that same day and was told it was basically not their policy to call patients with results but that I should have gone back earlier?
Anyway to cut an even longer story short he looked at my scan and said in surprise oh! You have Hydrocephalus and your going to need an operation to have a shunt put in to drain off the build up of csf in your left and right ventricles.
I said Is their any other way uther than surgery and he said we can try you on Edemox see how you go but you will need a shunt.
Having brain surgery filled me with fear so I went onto edemox which worked well for about 6 months before the problems started up again,
I went back and was booked in for a spinal tap which confirmed I had too much csf pressure in my brain the following week I had another tap just to be shore and the following week I had the shunt operation.
The first three/four months were very up and down but then it sort of settled down.
My walking and thinking became better almost strait away but the pains in my head and around the hole in my scull I have to live with I do sometimes get 1 or 2 good weeks and I enjoy every pain free second!
Summer2 is offline   Reply With Quote
Old 05-30-2017, 02:07 AM   #2
Join Date: Jan 2014
Posts: 124

have you heard of the adult hydrocephalus clinical research network (ahcrn.org) or the hydrocephalus association (hydroassoc.org)? I don't think I would stick with the doc who doesn't listen to you and doesn't review results (seriously!).
pogo is offline   Reply With Quote

brain, scan, started, time, told

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