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Algis wrote:I am glad to see all of you still here.

Personally the progress of the disease seems to have stopped. For years I had no relapse, tho I also don't regain any lost function.

@Doctor Sclafani: do you recall we once talk about a marker in the blood that peak when a thrombosis start forming? I searched the (too?) numerous pages trying to find the post but to not avail. Could you tell me again the name of this marker Doctor? Life is strange and my Spouse is now closely working with an R&D facility in Pharma stuff. I haven't quit my idea of suggesting a quick "marker" detector; cheap and effective,

Thank you Doctor; and all;

Be well;

Algis

It is D-Dimer.

It brings up an important point, ,markers of platelet activation are elevated in PwMS. This may explain the slight propensity for jugular angioplasty to result in thrombosis, especially in tobacco smoking MS patients.

DrS

Thank you Doctor. I will make an educated research and will talk with Mr.Yang; head of the R&D Center; with whom I have good relation.

I will keep you informed if that is agreeable with you; but in PM not to pollute the thread.

Good day to you;

Algis

Algis wrote:Personally the progress of the disease seems to have stopped. For years I had no relapse, tho I also don't regain any lost function.

That's a win, isn't it? Congrats.

drsclafani wrote:I am here but no one is asking very much. Strange, is it not?

Hi Dr. Sclafani. Are you still treating patients?

drsclafani wrote:Now that we may be reaching the culmination of all of our ruminations, no one is here.

It would be great if you could elaborate on the "culmination of all of our ruminations."

Thanks.

Cece wrote:That's a win, isn't it? Congrats.

Thanks Cece; I give credit to LDN; it is the only reason it could happen (tho I can't prove it). I have never been in a position to finance CCSVI and now will try to fund a MSCT at a Beijing hospital (see Stem Cells Board) in order to try to regain some functions.

Be well; all of you;

Algis

NHE wrote:

drsclafani wrote:I am here but no one is asking very much. Strange, is it not?

Hi Dr. Sclafani. Are you still treating patients?

drsclafani wrote:Now that we may be reaching the culmination of all of our ruminations, no one is here.

It would be great if you could elaborate on the "culmination of all of our ruminations."

Thanks.

"Ruminations means considered or deep thoughts about something". I would say that more than 1.3M posts is a lot of ruminations. "The culmination is the end point or final stage of something you've been working toward or something that's been building up.
A culmination isn't just the conclusion. It's the climax of the story..... the end result of years of research."

In the past few years there has been a considerable amount of publication regarding the anatomical derangements and the physiological effects of venous outflow restrictions on various neurological parameters, such as flow, perfusion and drainage. We know that the treatments are safe. We know why treatment should be beneficial. However no adequate clinical trials have been published that show that the treatment actually has a beneficial effect and relieves suffering.


So, while I cannot be specific at this point, it appears that that serious research has been done and randomized trials will be presented in the near future. They will likely be the first adequately powered trials of angioplasty that might provide evidence to convince regulatory agencies and payors that angioplasty is worthwhile and no longer experimental. I do not know the results of these studies so I am not promising anything. I am just saying that the wait may be reaching its end.

Patience, my patients

DrS

Where is everyone? I would say that the tidal wave has passed and we are a backwater currently. Joan has been successful with her CCSVI in Multiple Sclerosis facebook page. That is where I get some CCSVI news these days and where I see people sharing their CCSVI personal experiences, which is often either wanting to get the procedure but not having the money, or having had the procedure and wanting it again.

"Patience, my patients," always had an argument against it, which was, "Time is brain."

The cascade of negative studies over the years was discouraging. It feels like the current situation, where we've seen and experienced something that has not been captured in what studies there have been to date, will go on forever, but that is undoubtedly how everything feels before it suddenly changes.

It brings up an important point, ,markers of platelet activation are elevated in PwMS. This may explain the slight propensity for jugular angioplasty to result in thrombosis, especially in tobacco smoking MS patients.

Yes, interesting, isn't it? But there were plenty of other reasons too: lack of standardized anticoagulation, the unique postural changes that the jugular vein experiences, the possibility of untreated external compressions such as by the skull base or muscular that meant there was slow flow in the treated vein that interfered with healing, and most of all the lack of follow up care, during which time treatable thrombosis became untreatable. It would be an over simplication to make too much of the platelet activation, when those other factors were so prominent. Standardization and access to care would solve so much.

Cece, for me two things changed and saw a dramatic improvement in patency and thrombosis rate. Anticoagulation and antiplatelet therapy and use of ivus for sizing balloons.
I don't mean to be insensative work the patience thing. Unfortunately, a risk to evidence, led to really bad data,

drsclafani wrote:I don't mean to be insensative work the patience thing. Unfortunately, a risk to evidence, led to really bad data,

Oh gosh no, it does not come across as insensitive. I think you are saying that our long, long patience may be on the verge of paying off.

Let's hope for results that can stimulate us to investigate further instead of putting another nail in a coffin with an living person in it

more of a mass grave than a singular coffin
ugh regarding ubc results

from facebook CCSVI alliance

UBC trial results presented at the Society of Interventional Radiology meeting today.
"Controversial “liberation therapy” fails to treat multiple sclerosis: UBCVancouver Coastal Health research"

Dr Salvatore Sclafani has graciously accepted CCSVI Alliance's invitation to discuss the trial results and its presentation today. We will post the audio conversation later today.

http://www.ctvnews.ca/health/study-find ... -1.3315927

The slideshow at the bottom (found on above link) show UBC images of jugular veins getting the procedure done. Lots of images! They are heavier-handed with the dye than we are used to. They ballooned what looks like the standard area (lower jugular). There is a high degree of residual stenosis after the procedures (35% and 39% residual stenosis, after starting at 51-54% stenosis), that is higher than it should be?

Yes, because flow is proportional to the fourth power of the reasons, I estimated that there was an 80 per cent reduction of blood flow AFTER angioplasty

drsclafani wrote:Yes, because flow is proportional to the fourth power of the reasons, I estimated that there was an 80 per cent reduction of blood flow AFTER angioplasty

Did the diameter of the vein decrease?
Going from 54% stenosed to 39% stenosed would seem to be an improvement albeit a small one but if the diameter decreased, then that could explain your reasoning.

("Proportional to the fourth power of the reasons" is explained here: http://www.cvphysiology.com/Hemodynamics/H003 )

Why would the flow decrease after angioplasty? Was the balloon sized right for the vein? In slide 14 (Procedure 2), it looks like a big balloon. As far as I can tell, the images are immediately after angioplasty when the vein should be at its largest.

I'm unhappy with the results and I like getting an understanding of what went wrong but dang I hope the IRs at SIR see what you're seeing.