If IBT does not work does that mean CCSVI treatment won't?

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

If IBT does not work does that mean CCSVI treatment won't?

Postby Wonderfulworld » Wed Apr 27, 2011 1:52 pm

I have been using IBT for many months now.
I don't believe I am any better. I am no worse either - there are ups and downs. I have been having a symptom relapse since Dec and it hasn't gone - that's the longest I've ever had this symptom so IBT is not helping. In other ways I think perhaps my stamina is a little improved. Swings and roundabouts.
Just wondering if anyone else knows of any correlation between response to IBT and response to CCSVI treatment like stenting/ballooning?
In other words if I am much the same using IBT, will I be much the same after CCSVI treatment? or is that impossible to predict?
I was scanned for CCSVI and I was seen to have IJV valve problems - one valve was immobile.
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~~~~~~~~~~~~~~~
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Postby AMcG » Wed Apr 27, 2011 2:27 pm

I must say I am no expert in IBT although I have been doing it over a year now. The way I think it works is that it allows your vertebral veins (which go to the azygous) to work while you are lying down. So if your jugulars are not so good it helps.

Your vertebral veins are driven by gravity so they are the normal outflow path from your brain when you are standing up. When you are standing up your jugulars are supposed to be more or less shut down.

When you are lying down the opposite is supposed to happen. Your vertebral veins shut down (because gravity is not working in the right direction) and your jugulars open up. When you use IBT the idea is you put your head a few inches above your heart and make a slope of your body so that the blood coming form your brain runs downhill again through your vertebrals while your jugulars stay open.

So IBT will only help if you have dodgy jugulars and some flow in your vertebrals. If you have a blockage in the azygous then IBT will not help. Zamboni found most people with CCSVI have problems in the azygous.
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Postby MegansMom » Wed Apr 27, 2011 3:45 pm

Position influences Internal jugular vein drainage - they are used more when normal people are supine and less so when erect. So if one has CCSVI affecting the Internal jugulars you MAY see some symptom relieve with inclined bed therapy( or sleeping in a semi reclined recliner)
But this hinges on the location of the patient's CCSVI blockages, the number of blockages, the percentage of occlusion, and the degree of reflux.
You can have a CCSVI diagnosis with 2 but you can have many more.
That is probably why each case is unique in symptoms, because each case is a tad different.


Which would contribute to varying degrees of cerebral hypoxia ( lower than normal oxygen), cerebral hypoglycemia (lower than normal blood glucose) amount of iron deposited and elimination of brain tissue metabolic wastes. This is very varied. That's PROBABLY why the symptoms of MS are varied.
If you suffer from the symptoms
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby Cece » Wed Apr 27, 2011 7:01 pm

This is a really interesting question. I agree with the idea that IBT is most likely to help if jugulars are blocked and vertebrals and azygous are ok.
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IBT

Postby zinamaria » Wed Apr 27, 2011 7:29 pm

This is interesting because although I know I have CCSVI I am not sure of where etc (will find out with Sclafani in Oct)...but I had been sleeping with IBT for over a year after a major relapse in winter '09, and am now doing well, not where I was before the relapse but still always getting stronger it seems....then.. we moved recently and for a month I was not sleeping with the bed inclined and about two weeks into not sleeping like that I went through a major fatigue and weak in the legs. I did not even connect it to IBT until my husband mentioned it...it was just a matter of time to get the bed inclined again, but I certainly did not think anything of waiting a month.

Now, who knows, really? This is such a mysterious illness and what I do know is that nothing else in my life had changed i.e. diet, stress factors etc, so I connected it to the IBT. Now the bed is back on incline (we had to get the boards and bricks) and I am regaining my energy and strength. If it is IBT making the difference this bodes well for angioplasty in Oct...

But again, it is so hard to know, and I feel I cannot say for sure my little relapse was due to being flat. I do sleep awfully well with an inclined bed, but then again, I could have been a stowaway on a ship in another lifetime sleeping on bags of potatoes across the ocean, that's how well I sleep, and always have, cars, planes, couches, doesn't matter where.

BTW, my husband feels better sleeping on an incline too, he's always had migraines and he seems to do better overall.
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Postby MaggieMae » Thu Apr 28, 2011 8:41 am

IBT made no difference for my husband. However, our bed wasn't inclined to the degree suggested. It was inclined for at least two months and neither of us noticed a difference. However, with CCSVI procedure, he did notice differences in the numbness in his feet and legs. His problems were all in his IJV and not in his azygous. Who knows.
Last edited by MaggieMae on Thu Apr 28, 2011 11:50 am, edited 1 time in total.
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ibt

Postby zinamaria » Thu Apr 28, 2011 9:03 am

I really think if one is going to go with an inclined bed it is not going to have any immediate effects. I have no proof of this other than it seems that if we are going to try and change patterns in the body, i.e. blood flow, healing lesions on the brain etc, it is going to take a very long time, maybe even a lifetime for reversal, if there can be any reversal in the first place (which I believe there can be and is).
I feel this way about angioplasty, that I do not expect immediate results, maybe some, but other than a few minor or brief changes, it seems to me that the body needs time to make the adjustments...after all, it is The Body we're talking about here, like trying to discuss a planet, like Mars, just so much we know and equally, don't know.

I say all this only because we live in a time where we expect immediate results when it comes to treatments because that is the way western medicine is set up, pop a pill, cut it out, etc, but MS is the grand trickster because there is not pill to pop, nothing to cut (but maybe to open!), and even if one is taking one of the many drugs for MS, it is a lifetime therapy, hoping it is working, like with alternative methods, like diet, IBT etc.
All this, just my opinion.
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IBT: No Change

Postby fiddler » Thu Apr 28, 2011 9:12 am

I started IBT four months before liberation and noticed no change at all. I have had good symptom relief in the 12 months since having the procedure done. So, for me, there has been no correlation between IBT and CCSVI treatment.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
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Postby Wonderfulworld » Sun May 01, 2011 12:17 pm

Thank you all so much for your replies, I read them all with interest.
I know the CCSVI scan I had done excluded my azygous veins :( so I have no idea if there are blockages there.
There were no blockages in my IJV's either, just a totally immobile valve in the Right IJV, so it stayed open both standing or lying down. Having read the replies it does seem that if that is my only problem then IBT wouldn't help. But until I do a scan that includes the azygous, I think I will continue with IBT as I am no worse either.
Still sitting on my CCSVI fence for the moment!! :roll:
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby Cece » Sun May 01, 2011 1:45 pm

Wonderfulworld, a totally immobile valve is exactly what is meant when a CCSVI blockage is discussed. My left jugular had a totally immobile valve that caused a 100% blockage.

There is no way to do a scan that includes the azygous, as it's in the lower-middle of the chest along the spine. You can infer a few things based on reflux and the Zamboni doppler criteria and an examination of the vertebral veins by doppler ultrasound but to find out about the azygous you'd have to get the procedure itself.

Fence is a fine place to be during these early times. I am upset this week having learned of a friend here who has both of her jugulars occluded following a procedure last fall. It is rotten unfair.
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Postby Wonderfulworld » Mon Jun 06, 2011 12:56 pm

Wonderfulworld, a totally immobile valve is exactly what is meant when a CCSVI blockage is discussed. My left jugular had a totally immobile valve that caused a 100% blockage.

Cece sorry I should have replied to you a LONG time ago when you posted this, forgot about the thread :oops: .
I am curious - my jugular vein is staying open both lying down and standing and there is constant flow through it - it seems the opposite of a blockage, if you know what I mean? Is this still called a blockage?

I was just on holidays last week and slept in a flat (non-IBT) bed and felt wonderful....although it could have been just being on holidays, not having to cook/clean etc!

Interested to hear your reply as now I'm wondering if IBT is actually working aggainst me.......
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby Cece » Mon Jun 06, 2011 1:38 pm

That sounds like one of the zamboni criteria, ythe one where the jugular vein is bigger when upright than when lying down (opposite of how it should be). It's an indication of a blood flow problem...it might be big because it is pooled or because it is taking flow that would have gone down the other jugular? Not sure. But the Zamboni criteria are still being adjusted (they dropped the deep cerebral veins criteria) and are not one-to-one matches with what is found when the procedure is done. Best bet is a venogram with ivus by an expert.

If you feel better when not using ibt, then that is an easy choice! Glad to hear you got a nice vacation in.
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IBT numb hands & forearms

Postby Ned » Mon Jun 06, 2011 6:41 pm

I've had my third angioplasty for CCSVI 60% stenosed L &
R jugular & azygous. I have always had very numb hands and forearms when lying in bed, and angio did nothing to relieve this, so in the last few months I've tried sleeping with two pillows. The effect is Instant! Within 30seconds, the numbness dissipates from my hands. Conversely, if the pillows get too low, the numbness quickly returns.
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Postby ThisIsMA » Tue Jun 07, 2011 12:01 am

Hi Ned,

I have numbness in the tips of the fingers and thumb of one hand. It is the last remaining numbness symptom of an exacerbation where my entire arm and leg became numb. The level of numbness that I have now has been constant for more than a year, except that when I wake up in the morning (after lying flat in my case) the numbness is completely gone.

When I get up it soon returns. And when I'm having a stressful day, it gets worse than usual. But a good night's sleep makes it disappear again.

I see this as a clue that I may have vertebral vein problems, which would go well with the fact that I have had several neck injuries in my life, as well as having degenerative disc disease in my neck.

I haven't been tested or treated for CCSVI yet, but I hope to be some day. Did any of your 3 angioplasties include IVUS? If not, maybe they missed a web or some other subtle problem?
DX 6-09 RRMS
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Postby Wonderfulworld » Thu Jun 09, 2011 3:22 pm

That sounds like one of the zamboni criteria, ythe one where the jugular vein is bigger when upright than when lying down (opposite of how it should be). It's an indication of a blood flow problem...it might be big because it is pooled or because it is taking flow that would have gone down the other jugular? Not sure. But the Zamboni criteria are still being adjusted (they dropped the deep cerebral veins criteria) and are not one-to-one matches with what is found when the procedure is done. Best bet is a venogram with ivus by an expert.

Hmmm, not sure I understand....need to read more on this. The Right IJV was just totally immobile - so there was no pooling - the valve was completely immobile all the time and the flow was unimpeded.

I suppose, one year in roughly to my IBT experiment, I might take a break to see if I improve. My energy has been better, but some MS symptoms like nocturia and bladder issues have been much worse. It still makes me wonder if CCSVI treatment might disimprove me rather than help.....
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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