NeuroTalk Support Groups - New type of shunt

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Hydrocephalus (https://www.neurotalk.org/hydrocephalus/)

- - New type of shunt (https://www.neurotalk.org/hydrocephalus/351-type-shunt.html)

yes, and how are you doing with yours?

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

Quote:

Originally Posted by Spiritgal (Post 2351)

I was wondering if anyone else has a 'gravitational' shunt like me? It's a brand new type. I used to have a Codman programmable VP but I overdrained so badly I got slit vents. Then my NS told me he'd got a new model (less than a year old) from Germany called a Miethke proGAV. It's a VP programmable but works based on gravity and automatically regulates pressure whether you're standing or sitting so it limits posture-related overdrainage. Also, I don't have to reset it after an MRI scan or after going through airport scanners as it's resistant to even the heaviest magnet...the valve has no magnet although it's still programmable without surgery. Apparently the tubing is wide so blockage risk is reduced. Only had it a month but already my vents are back to normal size and I'm not overdraining for first time in 4 years! Apparently it's so new it's only been in the UK less than a year. I'll soon see if it's as miraculous as they make out!! Just wondered if anyone else has it or knows of anyone who has and how they've found it so far. I feel a bit like a guinea pig!! :)

I am interested in what you find out since I have so many similar problems. [QUOTE]

This sounds amazing!

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!

Quote:

Originally Posted by Spiritgal (Post 2351)

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!!

Quote:

Originally Posted by lezliej (Post 548659)

How did you know when to have the shunt adjusted? My daughter has a Strata II valve...now for one month. Her vision is really messed up. Just don't know if the shunt needs adjusting or if we need to give it time for the swelling in the eye to subside.

The rellief in vision is not immediate. The first shunt I got, my vision was just beginning to improve after 6 weeks, but I ended up having to have it revised. This time it is beginning to improve at 4 weeks. It is different for every person, I would assume, but it definitely requires patience and optimism! Good luck!

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. :o Thank you!

Actual success with programmable

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.

:wink: YOUNG MAN OF 41 RECENTLY RECEIVED THIS TYPE OF SHUNT. DOING VERY WELL. SMALL ADJUSTMENT SINCE HE ALSO HAD THE OTHER TYPE OF SHUNT FOR MANY, MANY YEARS. HEADS UP, GOOD LUCK

Quote:

Originally Posted by Spiritgal (Post 2351)