To those with programmables....

[Spiritgal]

...do your headaches get worse before they get better following an adjustment to the pressure on the valve? Suppose you can guess why I'm asking! :) Was in hospital yesterday having my gravitational shunt valve moved up by one from 3 to 4. It was inserted just over 2 months ago as my old one caused slit vents. Maybe it's recovering from those and getting used to 'normal' pressures again (had negative ones for years) but I'm in a LOT of pain! I'm not vomiting, no double vision or fits...but not sure how long to wait for it to settle. Anyone find this when they have theirs adjusted?

[Brandon's Mom]

Brittany had a programmable shunt for awhile (also because of slit vents) and her NS told her that YES, you will feel worse before you feel better after adjustments to the settings because your body needs to get used to the new setting. I don't remember how long he said it could take but I believe he said that it could be expected to take anywhere from a day or two all the way up to a couple of weeks. :eek:

[KathiDG]

I have a programmable valve...Medtronic Strata. It's been at 1.5 (medium setting) since being installed. Knock on wood, no adjustments yet...keeping my fingers crossed it stays that way, and if I need another revision, I can just get a medium pressure valve...we will see. My neuro said that programmables are a pain in the butt...so far the only trouble I have is when it rains.

Thanks for the heads up on getting pressure adjustments. Sounds normal to have it get worse before better from what you all have said.

[Spiritgal]

Thanks for your replies...am feeling marginally better today, although we had thunderstorms last night so that could have contributed (it's still raining constantly now). I suppose it would make sense that getting used to 'normal' pressures when I've been in the negative range for so long is going to take some getting used to! Every time I think about the problems associated with programmables, I stop and remember how lucky I am to even have this piece of equipment! Feel I shouldn't really moan about them at all! :)

[ConnersMom]

We have had no problems with Conner's programmable shunt, and haven't found it to be a 'pain'. He has had slight adjustments at his annual exams and doesn't seem to experience change of pressure or headaches.

Conner is fortunate that he has not experienced issues with his shunt or pressure after his shunt surgery.

Karen

[CathyE]

Was in hospital yesterday having my gravitational shunt valve moved up by one from 3 to 4. It was inserted just over 2 months ago as my old one caused slit vents.

I have to ask. what kind of valve are you talking about? Is it by any chance the one that has 2 "settings", 1 for when your lying down & 1 for when you're standing? I heard of this type - don't know the name anymore :D
from a man in Spain several years ago. His mother got it & it made her feel MUCH better!

Just curious if it finally made it to North America!

Cathy

[Spiritgal]

Hi Cathy,

Yes it does have two settings..one for being upright and one for lying down, to prevent under and overdrainage. It's called the Miethke proGAV shunt and there's not loads on the net about it as it's still new. There's no magnet in the valve either, so MRI scanners can't mess about with the settings and it's less likely to be accidently reset by magnets as it operates based on gravity. The tubing is wider too which reduces the blockage risk by a significant amount. Not too sure of where abouts you can get them, but there's only one hospital in Britain that has it and we've only had it here 8 months. Sounds good on paper....but I'm still adjusting to it so my jury's out!

[CathyE]

Thanks.

I hope you do very well with it!!!

Cathy

[Austinsmom]

How are you feeling?
When they adjust Austin's shunt and he has had many adjustments, he feels better or worse within a few days,( sometimes hours, when worse) but in saying that everyone is so darn different and how one brain reacts is not like another:confused: how you are by now feeling, ... better?, if not I would put a call into the Neurosurgeons nurse and ask what you should do, I never heard of your new shunt, sounds like a good idea, hope it works out for you soon.
Hugs
Deborah

[Spiritgal]

Thanks Deborah...actually not feeling good at all right now...food poisoning! :( Went out to a restaurant last night for first time since February and got ****** food poisoning! Was a little worried about how head would cope but even though the headache is worse now (which is hardly surprising, I've been ill all night and all day) it's been ok. It's taken a whole week for me to settle into the new pressure. It seems that on this shunt it's a slow gradual change rather than a sudden one, as my old one was. It's still not right but I'm due back in 3-4 weeks and my NS is going to try raising the pressure by one more level....he's doing it slowly and over time so I don't get high pressure symptoms. Keeping fingers crossed!

[Suecr]

Hayley has the Codman Medos programmable (range from 30 " h2o to 200" h20 with 30 letting out the most fluid). Has had several adjustments with no problems. Has had several MRI scans in which, though needs to be checked, did not move except for one time. Unfortunatley though, when she went to 30 to 90 B/C of slit vents, the vents did not enlarge. Likely facing a valve replacement.

[Denese]

I've heard good things about the anti-grav shunts... Dr Meithke has written several papers about them...do you have the meithke model? Still having compliancy is the key though...won't work with Bradley.

Last time I researched...which has been awhile...he was working on one as well that was resistant to scar tissue building around it...also one that was resistant to atmospheric changes. He was also working on portable non-invasive icp monitoring.

I hope this works for you & you can handle the pressure adjustments. None of the different settings ever gave Bradley any relief...we only noticed bad changes if we tried setting too low=less fluid drained...his shunt sticks so we've left him at 180 for almost 2 yrs now.

[Spiritgal]

Wow, sorry to hear Bradley hasn't found much relief with his shunt....I didn't with my old one, which is why I had it changed. It is the Miethke model I have (called a PROgav valve). I know it's resistant to external magnets changing the setting (because there ARE no magnets in this shunt!) and that the tubing around the valve and distal end is much wider to reduce the blockage risk. I seem to be very slowly adjusting, although I feel the pressure changes 110% more than on my old shunt! It has occured to me that this could be because this shunt actually does what it's meant to! The old one barely changed pressure at all: I was constantly overdraining, even on the highest setting and the valve just did its own thing!! :confused: This Mr Miethke seems to be a good chap to know; like the sound of the portable ICP monitor!!! Boy, HOW many problems would that solve!! :)

[JSARDONE]

I HAD A MEDTRONIC SHUNT PLACED JAN. 2006 AND HAVE HAD NOTHING BUT SYMPTONS SINCE THE SURGERY. I WOULD APPRECIATE ANY INPUT ANYONE HAS FOR ME. I AM NOT SURE IF THIS IS NORMAL AND MY DOCTOR HAS PRETTY MUCH QUIT ON ME. I HAD A SURGERY JAN. 2006 TO PUT IN REGULAR HIGH FLOW VALVE AND SHUNT TO DRAIN A CYST IN MY FRONTAL LOBE THAT WAS CAUSING HEADACHES. THE VALVE FAILED AND MY DOCTOR PUT IN A PROGRAMMABLE SHUNT FEB. 2006. SINCE THAT SURGERY I HAVE HAD A NUMBER OF DIFFERENT PAINS AND SYMPTONS. MY STOMACH HURTS FROM THE TUBE AND SOMETIMES IT FEELS LIKE THE TUBE IS PUSHING THRU MY SKIN AND THE PAIN WILL USUALLY START AT MY HEAD. I ALSO GET A LOT OF HEADACHES TYPICALLY WHEN IT RAINS, WHICH MY DOCTOR SAYS, HAS NOTHING TO DO WITH THE RAIN AND THINKS I AM CRAZY. I ALSO GET DIZZY SPELLS, LIKE THE ROOM IS SPINNING:eek: THE LAST VISIT I HAD TO MY DOCTOR AND DESCRIBED ALL MY ISSUES HIS COMMENT WAS, "WELL WE CAN TAKE EVERYTHING OUT".... I WAS SO MAD... SO, IS THIS NORMAL TO HAVE ISSUES WITH THE SHUNTS. I WOULD GREATLY APPRECIATE ANY HELP AS THESE ISSUES REALLY GET ME DOWN. I TRY TO BE STRONG BUT I THINK SOMETHING IS REALLY WRONG WITH MY SHUNT:confused:

[KathiDG]

I have a Medtronic programmable as well...I don't have the abdominal pain or anything like that, but I do get headaches when it rains, and also it seems when it is cold outside...winter is coming :(

I have heard a lot of people say that hydros can have headaches related to barometric pressure. I'm unclear though whether it's the actual having hydro that causes the headaches during that time, or if it's due to the programmable valve. I do know that before having the programmable, I did not have headaches related to weather, so I think it may just be the programmables because somehow the valve gets off kilter in cold/rainy weather.

Someone correct me if I'm wrong, but I think the Strata that I have comes with an anti-siphon? I know the Codman Hakim does, but not sure on this one...I thought I heard it said that the antisiphon can cause pressure headaches??

Kathi

[CathyE]

Yes the Strata has an anti siphon built right into it.

I have heard of people having anti siphon devices removed & apparently doing better. I'd love to know the circumstances that require this as I too have the Strata.

Actually I'm having a "good" spell. I still have to lie down 1 to 3 times a day, but I am able to accomplish a fair bit most days!
Cathy