new abstract from Bulgaria

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Cece
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new abstract from Bulgaria

Post by Cece » 7 years ago

Over on Joan's facebook CCSVI in MS page, an abstract has been posted of research done by the doctors at Tokuda Hospital in Sofia, Bulgaria. In 500 patients, 92% of them had CCSVI.

https://docs.google.com/viewer?a=v&pid= ... n_US&pli=1

Of note is the statistic for stenoses in the azygous vein. At 73.5%, this is much higher than the 20% that has been reported by other doctors.

In 461 patients after endovascular treatment, 81% had early improvements and 60% had later improvements. EDSS scores went from 5.2 to 4.7.

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Jugular
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Re: new abstract from Bulgaria

Post by Jugular » 7 years ago

This study is more in line with what we should be seeing IMO, but it doesn't appear to be a blinded one (though blinding a study involving US would be pretty hard to do since pwMS are usually easy to spot). Hopefully this study, with the new Italian one Cheer posted, will help turn the tide in favor of CCSVI. A favorable NA study now, and we'll be well on our way.

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Nasti
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Re: new abstract from Bulgaria

Post by Nasti » 7 years ago

Since I am a patient of the Bulgarian docs (Grozdinski and CCSVI team), I would say that this study is roughly true, but there is a certain percent of mistake in the results.
For example, when I was treated, I was in an acute state of relapse which was visible - I had difficulties walking. This had started 2 weeks prior to the surgery, I stayed for 4 days in the clinic and by the time I left, my walking had improved. This would have happened as a normal course of healing after the relapse, it always does in the same time frame. However, I had no immediate improvement after the surgery, the improving of my walking was already underway, so this was just temporal coincidence. There was no quicker healing and all the other symptoms that I sometimes have were still there. However, the doctors interpreted this as an immediate improvement of the surgery, and it was not, I am 100% sure about that.
I have had 3 more relapses after the surgery, which was a year ago. The first one was as severe as usual, but the next two were milder and I could take them with minor problems. They were about tingling and stiffening. So I would say that my improvements happened later. My veins are now 13 mm in the right jug and 7.5 in the left (they were .7 and 1.3 initially).

Therefore I would say that there is an approximate mistake of 10-20% in the results, but I believe that this is just as normal as with any other research. 10% don't change the implications - there are definitely positive results with CCSVI, and I believe with the stem cells in the future. Though we may feel like experimental mice, at least what we can be is healthy experimental mice. :)

Cece
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Re: new abstract from Bulgaria

Post by Cece » 7 years ago

Having a control group would've improved the data or requiring that patients be at least a month post-relapse, so that the immediate recovery Nasti describes would've had a chance to happen on its own.... But that wasn't the type of study this was, and even with the probability of some mistakes in the results (due to the up-and-down nature of MS and any placebo effect too) it is still useful data.

I remember bluesky saying that, although she still had relapses despite having had the procedure, she recovered faster from them. That in itself is a very good thing.

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