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Old 08-13-2009, 08:50 AM
DystoniaGal DystoniaGal is offline
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Location: Gainesville, FL
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Default Marcie/Jon's Mom

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Originally Posted by Nick,Brian,andJon'sMom View Post
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

I had the OSVII placed 7/9 and had a proximal revision on 8/5. I am definitely overdraining. I have a burr hole from my fenestration a few years ago. WHen I start to overdrain, the hole gets sunken in.

I am going to see if maybe I can email the OSV Manufacturer and pick their brains. From a shunt valve that claims no overdraining. It sure doesnt work well.

Let me know what you find out,
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 08-14-2009, 04:28 PM
Nick,Brian,andJon'sMom Nick,Brian,andJon'sMom is offline
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Suzie,

I will let you know what I find out next week. This is his 2nd OSV and he overdrained on the first one. We swapped that valve out for a programmable and we never could find the right pressure for Jonathan. Went back to the OSV after a series of revisions in June.

Marcie
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Old 08-14-2009, 04:59 PM
DystoniaGal DystoniaGal is offline
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My NS's nurse called me this morning giving me two options. Wait it out and see how my brain adjusts or go back to a programmable. At this point, I am opting for the programmable to at least get me back to work for a while and see what other options we have.

I am actually getting ready to head out to a dystonia fundraiser, where my entire team will be, so I will be chatting with the NS to see if he agrees with my decision. He always leaves everything up to, since I am so proactive and research everything involved in my care.

I just wish they had an ON/OFF valve. I did well on my programmable for 2 years. I am just trying to get back to work.

I am overdraining so badly, I can only be upright for about an hour before I start getting deathly ill. I'll let you know my outcome. Most likely I'll be heading to the OR next week.

Suzie
__________________
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 08-15-2009, 10:15 PM
CathyE CathyE is offline
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Wow, I have been "wishing for" an "On/Off" switch as I have been over draining due to being upright way more than usual preparing for my daughter's wedding Sat. Aug.22nd.

Yesterday and today I had to have long periods of lying in bed. So I am crossing off several "to do's" for a few days than I'll see if I can do them or not. (makeup "lesson", pedicure (I have difficulty doing a good job myself) and manicure (ditto), etc.

Back to you tho, sorry you are over draining that much.

March 2008 I had my setting lowered and really over drained even tho the exact same change preiously (a year previous) was not harsh at all.
Mine is the Strata and the anti siphon kicks in at a certain elevation - not while lying flat !!!
I could feel the flow slow/stop at a certain height and it helped me to adapt!
I have no idea what your valve is like re anti siphon characteristics, but it's worth a try - if it works.
Good luck!
Cathy
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I discovered I had Hydro at age 50 when it apparently decompensated, was shunted 8 months later. I was told I probably wouldn't be able to tolerate a shunt having had enlarged ventricles for so many years. I seem to have to alternate between the top 2 Strata settings.
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