I'd cry but that would only make me feel worse!

[DystoniaGal]

okay, sounds like you need a new NS, but you have already established that.

it sounds to me like you could be overdraining. does your shunt have an anti-syphon on it? I went through 4 different valves before we found one that worked for me. Not sure what hospital you are going to, but you can always try going to the ER and tell them you think you are in shunt failure. They will most likely do a CT, a shunt series, and a shunt tap.

How were you diagnosed with hydro? Was a lumbar puncture done? Was it based off of a CT scan?

Don't give up, keep trucking along and stand your ground.

Suzie

[DystoniaGal]

George
Did you ever contact Shands up here in Gainesville. It would be a 3 hour drive I think, but I am sure fresh eyes might help. If you consider coming, see if you can get to see Dr Kelly Foote.
Suzie

[Ponygirl]

:( I was born with Hydro, so, I have a shunt, myself. I had my 1st shunt put in when I was a couple of
months old. I had my 2nd revision when I was nine. I'm now, 45.
I *strongly* agree with the others who've, said, you *need* to find other dr.'s!! I'm sorry, but, your
Dr.'s don't know their a** from their elbows!!! You should *not* still be feeling so horrible!!!
Please, please, shop around for better Dr.'s at a different place, if, you need to!!!
I just want you to know, I understand, completely, how you can feel with a mal-functioning shunt.
Please, continue searching for Dr.'s until, you find one who, truly, wants to help you! :)

Phyllis

[dagaz]

Tiffany I'm going through much the same thing.. today the headache is off of the charts... after my dh got home from work he said press your shunt reservoir see how long it takes to refill.. 20mins later it finally refilled. My situation is a little different because I also have a cerebral spinal fluid leak... I know you wouldn't think it was possible to have both. We have to drive 5 hours tomorrow for a funeral I'm praying that my head ache doesn't return.. I was vomiting and all...not fun. I am going to get myself to my NS when we get back if things don't change...good luck...

[GTF]

Hi Suzie, We moved back to NY. After seeing 7 neurosurgeons both in NY, where I have been operated on 16 times.
And in the greater Orlando area there is nothing else to be done.
When the pain gets so bad I can't stand it any longer I have Oxycodone.
I do not take any pain meds on a continuous basis. I just live with the pain and have excepted that nothing else can be done.
We tried Botox injections all around my head. $6,000.00! What a waste of money.
Oxycodone with a glass of vodka and OJ still works the best.
Grin and bear it I do.

I miss living in Florida, well except for the humidity, I miss Seaworld, Bush Gardens, Downtown Disney and riding all the roller coasters.