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.

Postby Cece » Thu Jun 09, 2011 5:09 pm

I am not sure how the flow could be unimpeded if there is an immobile valve blocking the way? The valve leaflets stick out into the flow. At least mine did. My flow velocity in my RIJV was abnormally high, according to my first ultrasound with Dr. Cumming. This would be because the LIJV was 99% occluded and the RIJV was 80% occluded so the flow was making up for the occlusion as best it could by going at top speed?
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Postby Wonderfulworld » Fri Jun 10, 2011 2:04 am

I am not sure how the flow could be unimpeded if there is an immobile valve blocking the way?

The valve was non-functioning and open all the time whether standing or lying down - basically might as well have been no valve there at all. Does that make sense Cece? There seemed to be nothing wrong with my LIJV, just the right.
~~~~~~~~~~~~~~~
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~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
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Postby AMcG » Fri Jun 10, 2011 2:40 am

Wondefulworld, the symptoms you describe are consistent with an azygous problem. When standing your blood cannot go thru the azygous so it goes thru your jugulars. When supine the jugulars should be working anyway. So you will not benefit from IBT. But you might benefit from CCSVI treatment.

On sonography the only thing that will show will be flow in the jugulars in both positions and inability to image your vertebral veins (because they are not flowing). I had this on my doppler test. Direct visualization of the azygous is supposed to be possible by MRV using Haake's protocols. So if you are in th US and can get on a Hubbard trial they would look at it for you.
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Postby Cece » Fri Jun 10, 2011 7:24 am

Wonderfulworld wrote:
I am not sure how the flow could be unimpeded if there is an immobile valve blocking the way?

The valve was non-functioning and open all the time whether standing or lying down - basically might as well have been no valve there at all. Does that make sense Cece? There seemed to be nothing wrong with my LIJV, just the right.

Yes, that makes sense, it's the opposite of what I was thinking. It's the 'Doepp' version of jugular valve insufficiency, where the valve is nonfunctional, but in the allows-flow-to-go-both-ways sense of nonfunctional, not the CCSVI way of nonfunctional in which it is fixed and blocks the flow.

If you have no issues in the LIJV, that also somewhat supports the consensus that you have an azygous issue, because it is common for there to be stenoses in two veins, not just one, and with the LIJV out, that leaves the azygous as suspect.

When is your appt with Dr. Sclafani and his IVUS? ;) 8)
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Postby Wonderfulworld » Fri Jun 10, 2011 2:03 pm

Wondefulworld, the symptoms you describe are consistent with an azygous problem. When standing your blood cannot go thru the azygous so it goes thru your jugulars. When supine the jugulars should be working anyway. So you will not benefit from IBT. But you might benefit from CCSVI treatment.

Aha AMcG, thank you, that makes sense and confirms what is happening - no great improvement or disimprovement with IBT.

I had this on my doppler test. Direct visualization of the azygous is supposed to be possible by MRV using Haake's protocols. So if you are in th US and can get on a Hubbard trial they would look at it for you.

Yes, your doppler sounds like mine too. Unfortunately I live in Ireland and wish I could get to the Hubbard trial but not possible. :(

If you have no issues in the LIJV, that also somewhat supports the consensus that you have an azygous issue, because it is common for there to be stenoses in two veins, not just one, and with the LIJV out, that leaves the azygous as suspect.

When is your appt with Dr. Sclafani and his IVUS? Wink Cool

Gotcha Cece, it does make sense this way. Perhaps I will get to see Dr. Sclafani someday.....but I don't want to blow all my meagre savings on CCSVI just yet. Because I am not doing too bad at present, I want to wait to see if a correlation of defect/ccsvi outcome can be more closely predicted before I hop off my fence that I am currently sitting on!

As an aside I wonder if this type of defect in RIJV/possible azygos could explain the instant total deafness I experienced in my right ear, 13 years ago when diagnosed with MS first? Neuros have never totally been at ease with saying it is 100% related to my MS, but it happened in 10 seconds and I never regained my hearing. I am off to do more researching.

Thanks for your replies fellow-Thisisms'ers.
:wink:
~~~~~~~~~~~~~~~
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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Re: If IBT does not work does that mean CCSVI treatment won'

Postby AndrewKFletcher » Tue Sep 20, 2011 3:34 am

I have been reading this thread and found it very informative. Thank you for your contributions and updates.

Remember also that humidity increases during the evening and throughout the night. If you don't use air conditioning then please consider getting hold of a dehumidifier to run through the night. This complements IBT and fits well with the theory behind it.

Pauline Phelps from the first IBT study noted that when she used the dehumidifier at night, her dropped foot problem was gone in the morning and more to the point, if she did not use it her dropped foot problem was back the following morning. She repeated this experiment many times and it held true.

Sleeping on a lower angle as mentioned above will be slightly better than sleeping flat. 5 degrees to the horizontal has been shown to help people with multiple sclerosis. That said, raising the bed higher has not been shown to improve ms symptoms quicker than sleeping with the bed raised 6 inches at the head end. Also remember if your bed is longer than a UK bed at 74 inches you will need to adjust the height 1/2 to 1 inch more.

Request for help:

We need desperately to conduct a controlled study, I am hoping that an ms charity will step up to the mark and support the wages of the doctors. With this in mind it would be very useful to compile reports from people with ms who are using IBT in my forum at http://inclinedbedtherapy.com so that I can direct a charity to read this valuable information on one location. I am in no way trying to poach members from the forum and a simple cut and paste of posts in one thread is all that is required to achieve this.

The forum has been despondently slow to evolve yet I still feel this approach is the right one to move I.B.T. into mainstream practice.

best wishes

Andrew

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Re: If IBT does not work does that mean CCSVI treatment won'

Postby Jugular » Tue Sep 20, 2011 8:06 am

In my case IBT had little to no impact on my MS but CCSVI treatment sure did. So I wouldn't be discouraged by any lack of success with IBT.
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