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Advice needed on hydrocephalus


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Hi all,

I have had a surprise letter from my Consultant today.

I last saw him in July 2010 and it was pretty much assumed that it would be our last meeting. He said that for the sake of completeness I should undergo a further CT Scan, to assess, not so much the cause of the SAH, but the hydrocephalus I suffered after it. (I narrowly escaped having a shunt fitted by a matter of days.)

Apparently, I continue to have 'dilated ventricles,' i.e. water on the brain. It's not improved since December 2009; (but conversely it means that it's not got any worse either.)

Has anyone else had experience of this?

I am assuming that the lack of urgency on the part of the hospital means that they are not overly worried about it. I haven't been given an appointment date as yet, so had it been a big deal, they surely would have called me in immediately(??)

All this however, has reminded me of the infamous joke in the 1970s space drama, Blake's 7; about the best thing for water on the brain being a tap on the head!

Oh for true life to be as simple!

Lynne

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Lin - I am sorry to hear this - I didn't have this problem, but I think I would be on the phone to the Dr. and asking questions! I find it horrible that you were sent a letter:shock: So now you know it's not worse, but what does that mean for you if it also hasn't improved?! What are you supposed to do with this information? I do hope that you make some phone calls and demand answers.

I'm sure somebody here knows about hydrocephalus and will post soon. Hang in there - thinking of you!

Carolyn

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Hi Lin,

I suffered from hydrocefalus after my bleeds. The problem was I do not remember any of it. It did however delay my recovery. When they stopped my drains the pressure built up in my skull and I was "away with the fairies". They had to insert a VP Shunt but permission for the operation was down to my wife Julie. It was the best thing they did for me. Within a few days the problem corrected itself because the fluid was piped to my stomach. The first thing I knew about it was when I realised I had a scar on my stomach and a nick in my chest. I now carry a card with me that indicates I have a shunt fitted and that I suffer from hydrocefalus. The stats say that one in three shunts are likely to block which will make my symptoms return and I will behave in strange and lethargic ways possibly losing conciousness again.

It does make me wary of having the shunt fitted because of this risk, but the other consequence would have been devastating.

My condition apparently was fixed with no improvement thus the need for the shunt was definite. All I would say Lin is that if it becomes needed you may not be aware of the changes in yourself. It may pay you to get a Hydrocefalus Card to carry for your own protection. But the signs are good because you have had no change.:-P

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Hi there

I too had 'water on the brain' fluid build up got a shunt fitted but I produce too much vitimuns in the fluid so I also have a drain (hey my tap!!) John, I have a scar on my stomarch which at the time I couldnt quite understand :roll:brain op = scar on tummy:roll:

I agree they cant be overly worried but also to put your mind at rest give the hospital a call,

take care

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Thanks for everyone who took the time to reply. As ever, it is always reassuring to contact others who understand.

Louise, I didn't relaise you had a shunt, but I was aware that you had one John. You both speak so positively about your experiences.

I came so close to having a shunt fitted and was in hospital for 5 weeks because of hydrocephalus, so it was of concern at the time.

I'll phone my GP tomorrow, because the letter was sent to him too.

Thanks again for all your help.

L xx

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Hello Lin-lin,

Hope nothing is serious. Unfortunately shunts do malfunction at times - clogging, infection, wrong settings... so it isn't uncommon to have checks from time to time. Just make sure you are aware of signs that the shunt isn't working at its best -- change in neuro status, more drowsy, etc...

I'm a nurse working in a neuro ICU and have seen many patients with unbelievably problematic hydrocephalus from the start... and even they worked out in the end.

Best of luck!

Edited by savingthebrain
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Lin, yes I do but unlike what savingthebrain says I havent had any problems (touch wood) I know that you can get those that you maintain youself, mine isnt its in there to stay...

It hard because a lot of the time Im tired so it hard to work that one out....

without the shunt well I wouldnt be here.....

Hope the GP can help

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