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Old 08-04-2009, 08:42 AM
DystoniaGal DystoniaGal is offline
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Default Persistance pays off

So my headaches are still around. I sent out a mass email to my entire team and finally got a response from my neuro, who is away, his wife just had a baby. Finally got Neuro and NS to realize something was wrong. NS sent me an email on Sunday night telling me to come into clinic . So I went in today to see NS to check and see if my ICP was high. He tapped my shunt and there was no CSF flow. He could only get CSF out with a syringe. He thinks there may be a kink in the proximal end of the catheter.

So I head back to the OR on Wednesday for a shunt revision.He is hoping that it is just a kink in the catheter and should be an easy fix, but nothing is ever easy with me. I am hoping I will feel like a new woman once this happens.

Suzie
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DYT1 positive dytonia . Dx 1989.
Deep Brain Stimuation at Shands at UF in 2003.
Hydrocephalus dx in 1/2004 due to an infection and resolved as of 4/4/08. Hydrocephalus returned and shunted 7/9/09 with OSV II,revised 8/5/09. So many CT scans I should
GLOW
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Old 08-04-2009, 10:17 AM
hope9 hope9 is offline
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Good luck Suzie. Sorry you're going through this again but good for you for finally getting through to your NS! You're in my thoughts.
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Krissy! Hydrocephalus due to tectal glioma; diagnosed at age 6, now 19! Recently had my 5th surgery after my shunt of 11 years started over draining.. now I have a programmable! So far, so good
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Old 08-11-2009, 06:26 PM
DystoniaGal DystoniaGal is offline
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Revision complete, but still not headache free. So verdict is still out on this shunt. :-( I have been home for 2 months now and this is getting old.
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DYT1 positive dytonia . Dx 1989.
Deep Brain Stimuation at Shands at UF in 2003.
Hydrocephalus dx in 1/2004 due to an infection and resolved as of 4/4/08. Hydrocephalus returned and shunted 7/9/09 with OSV II,revised 8/5/09. So many CT scans I should
GLOW
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  #4  
Old 08-12-2009, 09:37 PM
CathyE CathyE is offline
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Oh darn, Suzie
I had hoped your title meant you were doing OK
I finally read it tonight to find out you're still suffering

I hope you notice some relief soon and if not that they figure out how to help you really soon!
Hugs,
Cathy
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  #5  
Old 08-12-2009, 11:20 PM
DystoniaGal DystoniaGal is offline
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Well today started off really well, no headache and well after lunch things went downhill fast. I am overdraining and I am miserable. I promised my NS I would give this 2 weeks for my brain to settle down. :-( So I have a little time left to wait. But so far, this is not looking like the valve for me.
__________________
DYT1 positive dytonia . Dx 1989.
Deep Brain Stimuation at Shands at UF in 2003.
Hydrocephalus dx in 1/2004 due to an infection and resolved as of 4/4/08. Hydrocephalus returned and shunted 7/9/09 with OSV II,revised 8/5/09. So many CT scans I should
GLOW
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  #6  
Old 08-12-2009, 11:50 PM
Nick,Brian,andJon'sMom Nick,Brian,andJon'sMom is offline
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What valve did they put? They gave Jonathan a new OSV 2 valve in June and he overdraining on it. We see the NS next week.

Hope that you are feeling better tomorrow.

Marcie
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  #7  
Old 08-13-2009, 01:46 AM
1Lily 1Lily is offline
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Suzie,
I'm still new to this board, and getting to know you and everyone else, but I feel for you very much. I'd imagine that overdraining feels very much like a positional headache, and those are just awful. I hope that you can stick it out for the next few weeks, and if there is a time to ask for help on things, this is it. Call in some favors so that you can lay low.
I hope that you feel much better soon,
Lily
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