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New Member
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#2 | ||
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Junior Member
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I was given my first revision from my codman programmable VP shunt in 2009. Of course I have had ProGav VP shunts since then. I hadn't needed surgery since 2006 before that time, and have had trouble with programmable shunt every 3 years since my first in 2003. I saw a pede NS who specialized in hydro and I had my first ProGav surgery in May 2009. One month later, I had problems, and was operated on again. By July 2009, I got meningitis from the second surgery, and was hospitalized for 4 weeks, and had another VP shunt revision, among other minor surgeries related to the shunt near the distal end. I have had since then, many headache issues with programmable shunts, but in the past 10 months, the pain has cost me my job because I was "on leave too long, and my med time ran out" and now, in 2012, I am facing VP shunt revision surgery very soon, convincing my surgeon that it WILL help me, but he thinks it won't change a thing, and is worrying my father about this. I am sitting here now waiting for thst scheduling call. It has just been too long. Beth
Last edited by bboberg; 02-02-2012 at 03:21 PM. Reason: explanations are better |
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#3 | ||
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#4 | ||
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Junior Member
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I had a vertical-horizontal gravitational but it wasn't programmable. I had a little ball inside like a level that opened when you laid down and shut when you stood up to prevent over draining. However this didn't work for me. I needed something programmable, and I still backed up...What you're talking about sounds like a perfect combination of solution to prevent the blockages with the wider tubing. I wonder why more aren't using it? I'm here in the US though and we're the last to get everything. The IIH website I am on is UK and the doctors there seem so far ahead and so much more knowledgable than ours here. I can't believe it repaired your slit vents! The slit ventricles were the reason they didn't want to do a VP shunt on me in the first place! Last week they did a VP shunt on me and I considered it an improvement because it is the first time in 5 surgeries that they have actually put a programmable shunt in me! Why would anyone not????? Surgery is so invasive! You are one lucky duck! Keep us posted on how it goes!
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#5 | ||
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New Member
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I also have a progav shunt, since 2008. I had obstructive hydrocephalus due to a tumor. The shunt has worked beautifully, I have MRI's every 3 months and still no adjustments needed! The only problem I am experiencing is it feels like I am forming adhesions around the tubing in my chest. Has anybody else experienced anything like this and if so is there anything that can be done to fix it? Thank you!!
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#6 | ||
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New Member
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Hi your post really got me thinking. I have been considering asking my NS to consider giving me a programmable shunt with my next revision. Now I am considering the MIETHKE proGAV. I do not even know if it is available in the US yet, but I really like what I have read about it. Until recently I thought that I didn't have a choice and that my NS made the decision. I have had my shunt for more than 40 years and still have so much to learn.
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#7 | ||
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New Member
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Has anyone seen actual success with programmable shunts? More specifically, any success with anything other than the Miethke proGAV?
I've had non-programmable shunts since I was 2 for congenital hydrocephalus, thats about 30 years now... All of my shunts have been medium pressure non-programmable. My first lasted for 17 years, and then I'd had one about every three years since. I'm over-draining now, not seriously but my ventricle is definitely small, and my NS wants to go with a Strata. But so far all of the posts I can find have nothing but problems with the programmable. Is there any actual good news with programmable? Or for those with programmable, would you recommend them or should i just stick with my tried and true version? Side note: I think I actually caused this problem. I was dieting pretty heavily for about 6 months and let myself get dehydrated repeatedly. I believe the repeated dehydration caused a decrease in CSF production and probably brought on my current symptoms. Bad me, but I don't think I can blame the shunt. |
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#8 | ||
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