IBT - continue after being liberated?

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

IBT - continue after being liberated?

Postby adamt » Thu Dec 30, 2010 3:45 pm

I started IBT several months before my first balloon angio and i noticed improvements in my night time bladder and very slight improvements in mobility - albeit varied

so recently had another balloon angio due to restenosis

my bed is currently half inclined = 4"/2"


Now im lierated would i still receive benefits from sleeping on an incline?
or as theres no longer stenosis, is it better to sleep on a flat bed?

i appreciate there may not be an answer, so opinions are welcome

thanks
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Postby Cece » Thu Dec 30, 2010 3:58 pm

No clear answers. I've had benefit from having an inclined bed but plan to lower it after I get treated. That way the jugulars will be at their fullest during the night when fully flat so that may make them less likely to clot. Just a guess.
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Postby esta » Thu Dec 30, 2010 4:13 pm

hi adam
i received a stent aug 26th, loewered my bed from 7 to 4".??????? don't remember why... dr. simka in poland recomended an inclined bed, but no height instructions.
nothing to report, except 7" was too high, i didn't sleep as well, and was more anxious , now at 4 i feel fine.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby EJC » Thu Dec 30, 2010 4:42 pm

Emma was liberated early this week and has decided to continue everything as before including IBT at 4" (along with Capoxone).

Continuity is the key - change one thing at a time and the results are more quantifiable. If you change numerous things in one go and you get a positive (or negative) result - which one was responsible?
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Postby Nasti » Thu Dec 30, 2010 5:27 pm

I elevated my bed somewhat before the liberation procedure and I slept on that for 3-4 months. No changes. But it definitely has sth do do with the blood in the veins. Though the findings are quite contrary: in a sitting position, the veins collapse, they are at their fullest while lying horizontally.
The implications are different for everybody, just like anything else with this disease.
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Postby Cece » Thu Dec 30, 2010 5:57 pm

Yes, the idea with the elevated bed is that the jugulars are full when you're lying down, but the vertebral veins are not being used. When you elevate it, gravity helps out plus some of the flow shifts to the vertebral veins. So, IBT would be helpful in someone with blocked jugulars. But in someone with blocked verts but decent jugulars, it might make them feel worse.
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Postby CureIous » Thu Dec 30, 2010 6:04 pm

I know that 9/10, if I sleep on my bed, flat, I don't feel as rested as sleeping on the couch, I wish it was inclined, on the couch I tend to sink in a bit more, there's a tad more angle than on the bed. I actually prefer the couch now, go figure. Who knows exactly what the flow is either way, this is just a personal "based on past performance" kind of assessment, that has remained fairly consistent over the past year. I'd love to get some incline on my bed eventually, not much it seems, just a bit....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby gibbledygook » Fri Dec 31, 2010 6:19 am

I had jugular stents in both jugulars from Stanford in June 2009 and more recently I was scanned by Dr Simka in a semi-upright position (to test the IBT) theory. When sitting semi-upright both jugulars were still taking most of the flow. I think IBT IS helpful but don't understand why as clearly the flow is not diverted to the vertebral veins on an incline. Perhaps the greater gravitational pull enables more flow through the jugulars.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Cece » Fri Dec 31, 2010 10:56 am

I agree about gravity playing a role, I think also that it's not about diverting all flow to the vertebrals (or the advice would be to sleep standing up or at a higher-yet incline). I think the 30% incline or 6 inch block is the sweet spot where the jugulars are still open and taking flow but the verts have additionally been opened up and flowing. Everyone is different too. For me even untreated, one of my jugulars closes when I am upright, it must be healthier on that side.
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Postby David1949 » Sun Jan 02, 2011 11:57 am

My bed has been inclined for many years because I have acid reflux. IBT definitely helps with that and doctors recommend it. I don't think it does much for MS though. However if your liberation treatment involved tearing the valves then IBT might help to keep the blood flowing in the right direction since the valves might not be able to do that anymore. That's just a guess though.
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Postby soapdiva884 » Sun Jan 02, 2011 5:27 pm

Hi everyone, not trying to hijack this thread. But, can someone tell me how we can do IBT? John does not do this, but we are planning on trying it. I am confused on what height we should incline at. Thank you so much.
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby msgator » Sun Jan 02, 2011 6:03 pm

I told the doc in Rhode Island who did my procedure that my bed is inclined (the full 8 inches or maybe 7?) he told me to keep it that way. I happen to love my inclined bed and didn't want to go back to sleeping flat. When I have to sleep with one of my kids for some reason on their flat beds I get all congested.

My husband likes the incline also for reflux reasons, so it works out.

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby CureIous » Sun Jan 02, 2011 10:15 pm

David1949 wrote:My bed has been inclined for many years because I have acid reflux. IBT definitely helps with that and doctors recommend it. I don't think it does much for MS though. However if your liberation treatment involved tearing the valves then IBT might help to keep the blood flowing in the right direction since the valves might not be able to do that anymore. That's just a guess though.


That's something I've wondered about myself, I know my right side gets tons of flow volume-wise, and the left too, but my right side was a flap, no valve, which was "unhinged" via angioplasty on my follow up treatment (which I will reiterate for posterity, was only to treat the venous hum noise, not anything else), but without any IVUS on the left side, not sure about the conditions there, but safe to assume due to it's already narrow architecture, that the original procedure would not have left much by the way of valves intact and functional.

Which leaves me with that pondering thing, knowing there's PLENTY of throughput, but how that may be affected in the lying position, without valves on either side to do what they do best. I ponder it a lot, just out of curiousity. If there is no disrupt in the middle, then it's safe to assume the pressure and volume is fairly constant from the heart, up through the SVC, then the jugs and up into the head, and as Cece points out, gravity is going to have a greater impact than if you have a check valve in the middle. Then again, we need to keep in mind that blood doesn't flow through our vessels anyways like a faucet, it's not on/off or turn the spigot down and get less flow in an even fashion or turn it up and get a steady even stream, it has a natural sine wave up/down already.

So what DOES happen to our flow when we sleep for hours on end, is the question at hand, and how DOES inclination aid in that if at all? I'd just like to try it for a few nights here or there myself and see if it helps, but can certainly live with what I got now, just getting greedy is all...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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