Some different perspectives in this article!
Quote:
Hector Ferral, MD, led the Rush study. He tells WebMD that the next step is to learn more about what is blocking the patients' veins. "We think there are valves in the jugular vein that are either too thick or are not closing properly," he says.
After that, researchers can design a study in which some patients get a fake treatment and others get the real procedure. Researchers will track both groups to see who is healthier.
The treatment should already be available to patients like the ones in the studies, Ferral says. "We have a good enough justification to do this procedure."
Henson disagrees. "This is not ready for prime time," she says. The symptoms of relapsing-remitting MS patients often get better on their own, so it's hard to know if they felt better because of the procedure. Researchers should study the procedure in animals before doing it in humans, Henson says.
Henson is a neurologist, with no involvement with the studies being discussed.
As someone with relapsing-remitting MS, my symptoms fluctuated, but within a narrow range. Fatigue was a symptom that did not fluctuate, did not get better, was severe, and had no good medication or treatment options. It improved after the procedure. Cogfog is another one that fluctuated within a narrow range but never got as good as I am now, and I'm not perfect now, but it is so much better. What does 'not ready for prime time' even mean? I've heard that phrase from my own neurologist. Not yet standardized, sure. But this is not a television network, this is my life, and there was enough logic behind the use of angioplasty to treat the stenoses that were there in my neck veins. They were imaged, they were MRI'd, they were there.
The procedure is being studied in animals, but animals are different than humans. (Dr. Sclafani told us yesterday that in mice, the sinuses drain into the retroglenoid veins, which is akin to the sinuses draining into the internal jugular veins in humans.) And other treatments for other venous stenoses don't get sent back to animal testing. Dr. Zamboni said well, when he said he was not a mouse doctor. The animal research needs to be done but it can be done concurrently with the imaging research and the endovascular treatment research.
No objections though to Dr. Ferral's statements! He suggest we need to learn more about what is blocking the patients' veins, and to that end, IVUS can be used and is being used by Dr. Ferral. It sounds as though he is seeing thick valves that are not closing properly, which is certainly what I had in both of my jugulars.
I'd like to hear more of what Dr. Ferral considered the good enough justification to do the procedure. I am 100% in agreement with him, and it would be nice to hear the argument laid out.
Throughout the article, there were a few mentions of the effects of the procedures of MS symptoms. There was no mention of the effect of the procedure on symptoms previously misdiagnosed as MS symptoms but now recategorizable as CCSVI symptoms. I was telling someone just this past weekend about how the colors had brightened by the end of the procedure, and how there was something that was red and blue in the operating room that I had thought was grayish when I went in but was clearly red and blue immediately after the procedure. Any symptom that is instantly changed such as that is not an MS symptom, but due to poor blood flow and hypoxia. The blood flow from the eyes drain into little veins that drain into the internal jugulars.
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