NeuroTalk Support Groups

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)

Spiritgal 08-31-2006 05:46 PM

New type of shunt
 
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!! :)

LIZARD 08-31-2006 08:58 PM

How kewl is that????!! Awesome...keep us up to date, you lab rat, you! :p :)



LIZARD :)

sjp_fanatic 08-31-2006 11:18 PM

Neat. I hope it works well.

skauzlick 03-08-2007 09:25 PM

Good Luck
 
I can't wait to hear how this new shunt works. I've got slit ventricles due a Spitz-Holter valve for over 41 years. I would like to hear from you when this works well and what kind of valve it is. I've had 30 surgeries so I want to be prepared. Thanks, Steve.

CoolAngel26 03-11-2007 08:12 PM

Lab rat,been there done that..Not with the shunt though..with meds..:)

mister 05-29-2007 09:57 PM

Lab rats and all the rest before
 
Hi:

If it wasn't for the "lab rats" most of us never would have made it to where we are today. Medicine has made it possible for so many of us to live a far better life than was possible.

Stayed away from this site for awhile and am so glad to be back and seeing how so many are doing and the new things that are coming along that will make the lives of so many easier in the future

tamiandrudy 01-15-2009 09:24 AM

I have never heard of this type of shunt. My son has a reprogrammable Strata valve shunt. It is remarkable. When he first got it, and say it was over draining or under draining, we could simply go into the dr's office and they would just change the settings. It has 5 different settings. Once the fluid was prety much drained, we are down to the onw of the lower settings to maintain the fluid. He had a ruptured arachnoid cyst on the left side of his brain. Have you heard or considered this??

lezliej 08-06-2009 09:48 PM

Quote:

Originally Posted by tamiandrudy (Post 446501)
I have never heard of this type of shunt. My son has a reprogrammable Strata valve shunt. It is remarkable. When he first got it, and say it was over draining or under draining, we could simply go into the dr's office and they would just change the settings. It has 5 different settings. Once the fluid was prety much drained, we are down to the onw of the lower settings to maintain the fluid. He had a ruptured arachnoid cyst on the left side of his brain. Have you heard or considered this??

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.

bboberg 11-27-2009 08:40 PM

meet another guinea pig with a Pro GAV!
 
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!! :)

However, I went through a Pede NS to get this shunt last May, but I wish I could say that I haven't had my share of problem with mine. I feel happy to hear that someone out there is surviving 4 years with no problems at all! I have had 7 neurosurgeries since the initial shunt valve replacement in May, and right now my NS is "fine tuning" my valve so that it doesn't overdrain, or cause the massive head pain I have been for 5 weeks. I had my first shunt tap since my last surgery, so maybe there's a clue as to what went wrong. Again Congrats that your shunt is in perfect working order; I wish I could go to bed tonight and think the same.

JIMmed 12-14-2009 02:59 PM

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 have a proGav shunt also. Sounds like the same kind. I'm new to this site and haven't posted anything. I've had mine since August, 2008. I had a craniotomy in 2001. The dr did a Fen. Didn't help much. Had headaches, my whole life, then in 1999, at age 40, I started having trouble with balance and walking. I found I had an arachnoid cyst, front right lobe, 7cm X 11cm, with massing effect and a small aneurysm. They repaired me, somewhat and sent me home in a week. Headaches never stoped. When they placed the shunt, I stayed lying down, for the better part of a month. Head did get better. After a few months, pain come back, almost as bad. Overall I think the shunt has helped, but I still have constant headaches, that still gets worse with low fronts, and sometimes, "who knows?" I wish you luck and can say, when I've had my shunt checked, it's always been right on, with no problems. I was scared to get one with some of the stories I've heard. My head may suck, but the shunt does seem to be doing it's job. Good luck and God bless.

bboberg 02-02-2012 03:15 PM

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

mgortney 02-05-2012 09:25 PM

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]

barbaracoffing 04-25-2012 03:21 PM

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 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!! :)


sm72 04-30-2012 08:36 AM

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!!

MissRachelRoo 05-13-2012 12:01 AM

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!

candlelight 06-22-2012 09:32 PM

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!

slicetech 10-03-2012 10:20 PM

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.

TIAMO 11-21-2012 05:50 PM

: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)
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!! :)



All times are GMT -5. The time now is 06:56 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.