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Just diagnosed with hydrocephalus! Help!

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Old 08-15-2009, 07:49 AM #1
monicad1974 monicad1974 is offline
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WOW!!! I should have done spell check...
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Monica, NC;1983 brain tumor:ceribellium attached to the brain stem; shunted 9 days later due to Dr./nurse error, 11/08 non programmable revision...

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Old 08-16-2009, 01:59 PM #2
dtyree dtyree is offline
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Greetings, I had a VP shunt put in to control the hydro which was caused by Chiari Malformation. The shunt has done wonders for controlling symptoms and have not had any. However, my neurologist says that my double vision and epilepsy has been caused from the shunt putting too much pressure on the brain. Soon after the shunt surgery, I experienced severe short and long term memory for about 9 months, some long term is still coming back. But this is me, it could be different for you since all bodies respond differently. And there are the tradeoffs, I no longer have the severe headaches.

The doctor that did the surgery is named Noel Tulipan associated with Vanderbilt hospital here in Nashville. He is considered the world leader in shunt surgery, so might be worth looking up if you can.

Peace,
David
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Old 08-24-2009, 02:57 PM #3
peaches217 peaches217 is offline
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hello,
i was diagnosed with hydrocephalus also. I dont have a shunt yet.
I will find out tomorrow whats going on and why they decided not to do the shunt. My ventricles are all enlarged. I hear the shunt helps a lot of people. So dont be afraid. It's better than letting all the fluid build up in your brain. Good luck to you and let us know what your neuro says.
Cheri
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Old 08-29-2009, 03:59 PM #4
miche27bbd miche27bbd is offline
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Quote:
Originally Posted by peaches217 View Post
hello,
i was diagnosed with hydrocephalus also. I dont have a shunt yet.
I will find out tomorrow whats going on and why they decided not to do the shunt. My ventricles are all enlarged. I hear the shunt helps a lot of people. So dont be afraid. It's better than letting all the fluid build up in your brain. Good luck to you and let us know what your neuro says.
Cheri
How old are you?
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Old 09-06-2009, 08:34 AM #5
monicad1974 monicad1974 is offline
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How old are you?
Putting a famous face to Hydro... Rev. Billy Graham has hydrocephalus.

His developed in his later years but I thought it might give you someone to relat to.

When it comes to getting a shunt or not it is usually to improve your quality of life. If you can live with the systems of the hydro it may not be what you need. I support trying other options. But most of us need the shunt not just to help a headache. And everyone is different with different systems. No 2 hydro peeps are the same.
__________________
Monica, NC;1983 brain tumor:ceribellium attached to the brain stem; shunted 9 days later due to Dr./nurse error, 11/08 non programmable revision...

Find me on facebook:
.


ref=home#/pepperknowsbest?ref=name
or my blog
.
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Old 09-10-2009, 04:35 PM #6
peaches217 peaches217 is offline
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Quote:
Originally Posted by miche27bbd View Post
How old are you?
Hi I'm a 47 year old woman. I have hydrocephalus but they say no shunt. I have to go to cleveland clinic soon for a second opinion. My ventricles are all enlarged but they say no leakage? I have all the symptoms that comes with it though. Also found out I have an aneurysm size 7mm on my basilar artery tip. Gonna have an angiogram done next week for that. Any one else out there having coiling or clipping done for a basilar tip annie?
Cheri
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Old 09-30-2009, 11:22 PM #7
brainiac brainiac is offline
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Originally Posted by miche27bbd View Post
I am a 33 years old. I was in a car accident a few weeks ago and about five days after the accident I had trouble speaking, putting papers in alphabetical order or number order, and trouble hearing out of my left ear. I went to the doctor and he ordered a ct scan and said I had severe hydrocephalus. He said it looks like I've had it for awhile but that the accident brought on my symptoms. I've had an MRI but the neuro said he was not in a rush to put in a shunt. He put me on a medication called Diamox. Does anyone else take that? My symptoms started to improve before the medicine and the medicine has helped them improve even more, but I'm not where I was. Now, I think even with the medication I have leveled off and I am not improving anymore. So far, what I have read on here about shunts is not good. It seems like I'll be better off without one. Any opinions on that? I need some feedback all this waiting for answers from the doctors is inhumane.

Any information will be appreciated.

Thanks,
Miche
I have the same condition, I had 2 surgeries before having a shunt put in, now at least the headaches have eased.
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