any IRs NOT focusing on the valves?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Rokkit
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Post by Rokkit »

gsiskin wrote:A repeat angioplasty may help but you should make sure that you really had a significant clinical benefit to the angioplasty before going into another procedure because there is always risk to repeat procedures. In other words, if your symptoms got a lot better after the first angioplasty then I can understand retreatment.
It seems several docs have been saying if your symptoms got better and then you lost the improvements, you probably restenosed. But here's an issue I've been wondering about. If you don't have improvement after angioplasty, it could still be that the restored flow has stopped or significantly slowed progression of the disease. We don't know if that's happening, but it is possible, and it's something we're all hoping for obviously. But in that case if you restenose you'd have no way of knowing. An ultrasound would help if your problem is only in your jugulars, but I haven't heard of many docs recommending follow-up ultrasounds.

Is there something to this, or are the docs of the opinion that if you don't have improvement then the treatment "didn't work" and you can forget about it?
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Post by Cece »

drsclafani wrote:so all those you mention are looking at different ways to address the valves. My dear colleagues in del mar included

s
gsiskin wrote:If one practice chooses to call this procedure valve ablation and another chooses to call it angioplasty, please know that for now, we are all talking about the same thing.
Thank you both, this makes sense to me.
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Post by 1eye »

I would like to know this too. My version is this: 'MS' disease progression has been thought to be measurable by looking at gadolinium-enhancing lesions. Disability in a very gross form is also measured with EDSS and perhaps more finely with peg testing. (I think there should be much finer measures determined, as well as perhaps live oxygen-use maps in scans like I have heard of PET being used for) Is there any improvement being measured anywhere by anyone in these areas? Is anyone ever going to repeat Dr. Zamboni's numerical measurements of definite improvements in gadolinium-enhancing lesion burden?

If restenosis occurs will it make any measured disability improvements go away? Will gadolinium-enhancing lesions return? Neurologists have used time frames of three months to two years. One of the attractions of the Procedure has been that some of the improvements seem to be immediate in some patients. Certainly my experience has been limited to the past six months. Are any longer-lived improvements ever expected? I have seen claims that, with stenting perhaps, they can seem fairly permanent. Do they last as long as the good blood flow lasts?

These seem to be 'MS'-centric questions. But let us be honest with ourselves, forget politics, ideology, etc., and start asking them! Or is that asking too much too soon?
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eric593
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Post by eric593 »

1eye wrote:I would like to know this too. My version is this: 'MS' disease progression has been thought to be measurable by looking at gadolinium-enhancing lesions. Disability in a very gross form is also measured with EDSS and perhaps more finely with peg testing. (I think there should be much finer measures determined, as well as perhaps live oxygen-use maps in scans like I have heard of PET being used for) Is there any improvement being measured anywhere by anyone in these areas? Is anyone ever going to repeat Dr. Zamboni's numerical measurements of definite improvements in gadolinium-enhancing lesion burden?

If restenosis occurs will it make any measured disability improvements go away? Will gadolinium-enhancing lesions return? Neurologists have used time frames of three months to two years. One of the attractions of the Procedure has been that some of the improvements seem to be immediate in some patients. Certainly my experience has been limited to the past six months. Are any longer-lived improvements ever expected? I have seen claims that, with stenting perhaps, they can seem fairly permanent. Do they last as long as the good blood flow lasts?

These seem to be 'MS'-centric questions. But let us be honest with ourselves, forget politics, ideology, etc., and start asking them! Or is that asking too much too soon?
These doctors are treating patients, not performing research.

The research trials will eventually provide the data that you seek.
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1eye
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Post by 1eye »

It was my understanding that a few of them are doing both. If they are treating patients, they fit right in here, as that is what most of us are (though it is also what some of us are losing, unfortunately). I do hope the answers come soon. I and a few others are curious.
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