IBT - Should it be used after you have been liberated?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

IBT - Should it be used after you have been liberated?

Postby adamt » Sun Sep 05, 2010 4:00 am

I started Inclined Bed Therapy about 5 months ago, and a few weeks after starting IBT i noticed my ';night time' bladder improved, so i didnt need to get up at night to use the toilet

i raised the bed by 6" at the top and 3" in the middle


But since coming back from Poland, i am having regular night time bladder problems, which is strange as i rarely did soon after starting IBT


I am questioning whether using IBT is useful once you have been liberated?
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Postby esta » Sun Sep 05, 2010 8:04 am

same here adamt. i just thought it was getting back to a routine of sort and all would be well again.... i've been inclined 7 inches since feb too.
hmmmmmmmm
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Postby Cece » Sun Sep 05, 2010 9:58 am

1eye raised this concern in another thread, he convinced me to think twice about IBT after liberation. I've had my bed raised 6 inches since January, it's made a big improvement with my fatigue.

For anyone new to IBT, the idea behind it is that the jugulars (which should be closed when standing and open when lying down) are not sufficient to drain the brain when lying down. Raising the top of the bed with risers under the legs allows gravity and the vertebral vein drainage system (which is what drains the brain in lieu of the jugulars when standing) to assist.

Immediately after a venoplasty procedure in which the jugulars were ballooned, there should be strong flow going through the jugulars. What we don't want is for those jugulars to clot or grow back together. When standing, they will be closed (if normal flow has been restored) so it's when lying down that they will be open and the flow of blood will be holding the walls of the jugular open and separate. IBT, by diverting some flow off to the vertebrals, would reduce how much blood is flowing through the jugulars. They would not spend as much time at full openness. In theory this could mean they're more likely to clot together when in a deflated state. The risk of this would be at its highest immediately after the procedure and gradually decrease. Some docs stop anticoagulants at one month and some at three months, so those might be target points when to stop worrying about this and resume IBT. Another idea suggested recently here is to spend as much time as possible lying down in the few days following the procedure. This would keep the jugulars open and flowing, since they deflate when standing.

Other parts of the body that have been angio'd do not have this sort of system where they're in use in one posture and not in the other. So this may be new territory where the docs don't know yet what advice to give for best outcome post-procedure.
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Postby adamt » Sun Sep 05, 2010 10:08 am

thank you cece for the reply, but i dont fully understand whether i should continue with the bed inclined or not?

as im apparently liberated (not 100% sure if i still am) could the reason i am having night time bladder problems, be because i am sleeping inclined?

Is using IBT as useful once you have been liberated?
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Postby Cece » Sun Sep 05, 2010 10:16 am

That part is unexpected. Why would liberation or IBT cause nightly bladder problems to increase...I would think it'd do the opposite. If it were me I might lower my bed for a few days to see if that makes an improvement and judge based on how I'd been feeling if I wanted it up or not. There's no set answer on any of this. If within a month of liberation, maybe it's best not to have your bed raised, but even that who knows for sure?
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Postby val57gal » Sun Sep 05, 2010 10:30 am

I talked about this on another thread, so forgive me if you've read it.

I started IBT (well, using a 6" waist-length wedge pillow) 2 weeks after my first procedure (IJVs ballooned). All had been well up to then. Five days later, my right IJV started to hurt, with the pain traveling upward toward the brain. When I went back for my 2nd procedure, both IJVs were completely blocked. So I've given up the wedge, just in case reducing the flow through the IJVs allowed them to collapse.

I've got to tell you, though, that this is just my theory. My doctor thinks the restenosis was more likely because he used too-small balloons the first time, as he would for other venous procedures. (Since then, he has learned more about how CCSVI affects veins, and uses bigger balloons.)He said it was POSSIBLE the wedge/IBT was involved, because heck, no one knows right now.

I may go back to it after 3 months or so if my veins stay open and my improvements continue, but I'm a little leery of losing my nights without bathroom visits. They're so wonderful!
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Postby adamt » Sun Sep 05, 2010 3:35 pm

Thanks everyone for your replies :)
I will decline my bed to flat for 1-2 weeks to see if my bladder improves


Also i was thinking, because i slept on a flat bed in Poland for 2 nights after the procedure - when i noticed my best gains on the 2nd day.
i went back to IBT on day 3 onwards.

day 3 onwards to day 21, which is today, my improved mobility has gradually gone back to before liberation condition - maybe a little bit better
and the bladder immediately got worse 2 days after sleeping on a flat bed

Is it possible that my gradually lessening of improvements was due to sleeping on an inclined bed?
if this is the case, would you expect my 2days post lib improvements to come back by sleeping flat?

thanks again
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Postby 1eye » Sun Sep 05, 2010 4:20 pm

I think here we're all guessing and taking hunches.

Don't change more than one independent variable at a time. And keep notes, if possible.

I have been bad, and have no done my Functional Composite in full, post lib. My intention was to do all three tests at baseline, 1 week, 1 month, three months, and at three month intervals after that. But it didn't get done for some past a week, though I just have PASAT left to do. Probably in the beginning it could be more often. But I think the jury's still out on how long restenosis takes. I've got an appointment to find out how I am on a Doppler.

Also, it seems we are mixing a lot of primary progressive apples and remitting oranges. Try not to compare your own case with someone badly mismatched, as to 'type', age, length of disease, or other things which could affect your progress.

I think: we have been patient, getting Liberation. We also need to be patient with that. Give it a few months, before re-doing it. jmho

I have a feeling I am in for a hellova placebo response. Well, like somebody said, who cares? If my mind did it, more power to me.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby BadCopy » Mon Sep 06, 2010 5:50 am

1eye wrote:I think here we're all guessing and taking hunches.

Don't change more than one independent variable at a time. And keep notes, if possible.

I have been bad, and have no done my Functional Composite in full, post lib. My intention was to do all three tests at baseline, 1 week, 1 month, three months, and at three month intervals after that. But it didn't get done for some past a week, though I just have PASAT left to do. Probably in the beginning it could be more often. But I think the jury's still out on how long restenosis takes. I've got an appointment to find out how I am on a Doppler.

Also, it seems we are mixing a lot of primary progressive apples and remitting oranges. Try not to compare your own case with someone badly mismatched, as to 'type', age, length of disease, or other things which could affect your progress.

I think: we have been patient, getting Liberation. We also need to be patient with that. Give it a few months, before re-doing it. jmho

I have a feeling I am in for a hellova placebo response. Well, like somebody said, who cares? If my mind did it, more power to me.


Thank you 1eye !!! I have never worked on the human body but I have been troubleshooting everything from cars to aircraft my entire life and the GOLDEN RULE is never change more than one variable (part) at a time unless you are positive that's the problem. Or, obviously, your doctor tells you to. Also, your doctor is your first place for information. It's nice to come on here and get opinions but even if someone on here is a doctor, are they your doctor?

As for me: liberated late August and actually asked cece, among others, about IBT before coming to my senses. Ask your doctor first and if he/she is unavailable don't change more than one thing at a time. Because you won't know what change you made caused the improvements or problems.
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Postby esta » Mon Sep 06, 2010 10:41 am

hi all
ok, i was just stented Aug 26th, and layed on a flat bed for 6 days, then home to a 7" incline, and didn't notice many of my previous postive changes, which i related to being tired and stenting taking longer to react, but now...i'm worried about the IBT thing, so have comprimised today to try 4". i'm doing this for the night time bathroom trip, and my noticibly more purplely feet. i'll let you know in another week. i get the 1 variable thing, but this makes sense...what the heck.
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Postby Cece » Mon Sep 06, 2010 11:28 am

BadCopy wrote:As for me: liberated late August and actually asked cece, among others, about IBT before coming to my senses. Ask your doctor first and if he/she is unavailable don't change more than one thing at a time. Because you won't know what change you made caused the improvements or problems.

It was in the last week or two that 1eye scared me off of using IBT post-liberation. :)

I agree about changing one variable at a time in general. I wonder especially about people going off their DMDs right after getting the procedure, since that can cause a rebound effect. But with IBT, if the reason it is working for me is that it closes the jugulars somewhat and opens the vertebrals, then post-CCSVI treatment I don't want those jugulars closing.
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Postby tipsyturtle » Tue Sep 14, 2010 3:40 pm

FYI to all regarding IBT.
Dr. Simka personally suggested that I use it (this was 3 months after the procedure).
Now, even my husband prefers it to sleeping flat!
Katowice, April 7/8
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Postby blossom » Wed Sep 15, 2010 1:36 am

tipsyturtle, did dr. simka mean it was ok right after treatment or is it best to wait 3 mo.? i do miss my ibt. but was unsure.
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Postby tipsyturtle » Wed Sep 15, 2010 7:54 am

Blossom,
He didn't actually say when to use it- he just said it would offer "additional benefits" to the procedure due to ease of circulation when using IBT. If you are unsure, start gradually. The reason I said 3 months was because this was the time that he mentioned it to me. I was corresponding with him due to post-liberation ups and down. He suggested IBT and to be patient. My take away was to not over analyze every day and monitor how I was feeling all the time.
Hope this helps.
:D
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Postby esta » Wed Sep 15, 2010 8:06 am

ok, one week later, lowering my incline from 7-4". i'm not getting up at night. thats all i've noticed, the rest of the improvements is probably my healing. Having too mant variables at once is dangerous, and of course now i'll never know..
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