FlashHack is Liberated

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

Postby nicknewf » Mon Sep 27, 2010 7:23 pm

So how was your neuro appointment? Can't wait to read the story.

My wife had her treatment today, and is doing well. Sore azygous, sore neck. All three ballooned, no stents, no miracles, mild symptoms anyway. See how it goes in a few weeks.
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Postby cheerleader » Mon Sep 27, 2010 8:14 pm

FlashHack wrote:But, my main problem was in the azygos and that chart was directly to the right. Holy cow! Of the 56 patients where Zamboni found problems in the azygos only one restenosed at 6 months (one other had to be stented right out of the gate, the only stent Zamboni used)!! That means 96% of the treated azygos veins stayed open. So if your problems are limited to the azygos, as mine were, you don't have to worry much about restenosis. Whew!

I'm sure that most of you already saw that, but I hadn't and so I thought I would mention it in case someone shared my ignorance.

Yup. You mainly azygos folks have won the lottery :)
I remember thinking, when I heard Zamboni present the 96% figure in Bologna...well, your MS course is tougher with azygos involvement, but the repair is easier! And it holds.
breath easy and keep healing, Flash--
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby FlashHack » Mon Sep 27, 2010 9:25 pm

Thanks, Cheer!

Well, I saw the head of Neurology at OHSU today. I related to him all of my improvements and he recorded them in my chart. I described my procedure and where the doctor had found stenosis. I asked him if he had altered his position on Zamboni's theories. He said he had not and then asked me if I had heard of the two studies that used Zamboni's scanning protocols but couldn't reproduce his results. Disappointing, but not surprising.

He was glad to hear that I was participating in one of the gait studies they are doing. He also told me that he wouldn't charge me for my next appointment if I still didn't have insurance. He also asked if I wanted to get back on Rebif (I stopped in June). No thanks, doc!

I will see him again next May. While I hope that he changes his thinking by then, will it really matter? Will the Interventional Radiologists at OHSU continue to cow-tow to Neurology while their colleagues at other hospitals are doing procedures and validating Zamboni's findings?

One upside was that before I saw the doctor I did my thing with the gait study. On each 6 month visit they have you fill out a survey about your MS. The last question asked you to describe your disability progression by selecting one of several charts. Each chart had time moving from left to right on the X axis and disability on the Y axis. Of course on each chart disability increased over time in different patterns. I cheerfully told the researcher that I couldn't choose any of the charts because my disability line was now going the other direction.
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