6 out of 40 (dake's patients) worsening over time

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

6 out of 40 (dake's patients) worsening over time

Postby Cece » Wed Mar 02, 2011 4:25 pm

http://www.medhelp.org/user_journals/index/333672

This is shoshin's blog, she is one of the Dake originals. This is from December 2010, so just a few months ago.

Interestingly, Dr. Dake said they saw a similar course to mine in five or six other people out of the 40 or so they treated. I got the impression these were more progressive patients, but now I'm not sure. People in this category saw an improvement, sustained or mostly sustained, in what they are calling global symptoms, such as fatigue, cog fog, and temperature sensitivity, which Dr. Dake thinks are the sort of things most likely to be helped by improved blood flow. These patients also saw improvements in motor and other symptoms where it is less obvious how improved blood flow would be effective. As in my case, after some time, these results wore off and they began to worsen. The people at Stanford don't know why this might have happened.

What do we make of this? Initial or maybe sustained improvement in all the "cerebral MS" stuff, even in the motor areas initially, but then continued decline in the motor areas?

Could it be missed azygous stenosis? Or MS having an autoimmune component, that has been triggered by the immune system's access to the brain and can't be stopped just by fixing the vascular stenoses? Could it be restenosis?
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Postby CCSVIhusband » Wed Mar 02, 2011 4:42 pm

Could be any of them, Cece to be honest. Nobody knows, but if 15% are worsening after almost 2 years (6 out of 40) ... That means 85% aren't.

... but like Loobie is saying - Dr. Dake didn't fine NEAR the frequency of azygous issues described by Dr. Zamboni
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Postby 1eye » Wed Mar 02, 2011 4:46 pm

Here I must agree with those who say we don't know enough. Easy for a person who is not one of those people yet, to say. After reading about Erika, I wonder if there is a blood consistency thing we are missing. The guy who gave me an incorrect clean bill of vein health, also said my blood was thick, like peanut butter. I can't help thinking there is a viscosity problem that varies rapidly with temperature.

Lots of unknowns and lots we don't even know we don't know.

Erika, you were the first post I read on TIMS, two Decembers ago. I'm pretty sure it was in a library on a public terminal. You changed my life. Thank you. At least sometimes I have music again. I can't walk yet, but it's coming along! Keep walking as long as you can.
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Postby Cece » Wed Mar 02, 2011 5:43 pm

...sorry, OT and over my own head...(about effects of temperature on oxygen saturation of blood)...
Last edited by Cece on Wed Mar 02, 2011 7:24 pm, edited 1 time in total.
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Postby CureIous » Wed Mar 02, 2011 6:41 pm

CCSVIhusband wrote:Could be any of them, Cece to be honest. Nobody knows, but if 15% are worsening after almost 2 years (6 out of 40) ... That means 85% aren't.

... but like Loobie is saying - Dr. Dake didn't fine NEAR the frequency of azygous issues described by Dr. Zamboni


And granted, this was a bit early in the game. Don't believe IVUS was a mainstay at that point. Look at what was found during my IVUS at the 1 year follow up, perhaps that was the smoking gun causing the stenosis on the right side to begin with? The truth will never be known about that, but in my mind it's irrelevant as pertains to my particular situation.

That being said, if any Dr. of MS patients were to say, "I have a proposed treatment, which so far has alleviated progression in 85% of my patients so far approaching the two year mark, would you be game?", how many would jump at the chance, stents or no stents?

Granted, there is much still being learned along the way, many more pioneers to come, personal sacrifices have been made by some of those pioneers (I speak globally), whether it be via contribution to the knowledge stream, or sadly by learning what NOT to do.

With what is known now and being learned about the flow dynamics inside the veins, regardless of physical appearances (transient type stenosis which doesn't require treatment for instance), those infernal flaps and valves, and how US, MRV, Venography are finding their own niches, be it as a screening tool or direct pathology identifier, the patient who can wait a year or two and demands verifiable credentials and experience in the CCSVI paradigm, will be at a major advantage to those who went before.

2 years of bittersweet.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Cece » Wed Mar 02, 2011 7:22 pm

I'm reading the percentages a bit differently. We know that 6 out of 40 (15%) had improvements to begin with, then gradual worsening. This is what she said about these other patients having a similar course to hers. But I can't assume that the other 34 out of 40 have an upward or a flat course. The 15% had an up, then down course; perhaps an additional percentage had a flat, then down course, or a directly down course. We also know from reports here that some have had an upward course, with only positive results.
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Postby CureIous » Wed Mar 02, 2011 7:53 pm

Cece wrote:I'm reading the percentages a bit differently. We know that 6 out of 40 (15%) had improvements to begin with, then gradual worsening. This is what she said about these other patients having a similar course to hers. But I can't assume that the other 34 out of 40 have an upward or a flat course. The 15% had an up, then down course; perhaps an additional percentage had a flat, then down course, or a directly down course. We also know from reports here that some have had an upward course, with only positive results.


Seems every time a Dr. or research center in this opens their mouth with some numbers, it's what's NOT mentioned that causes the most debate. I guess all we can do is speculate then. Whatever the other 85% experienced is anyone's guess. I wish all his patients were on here that's for sure.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Cece » Wed Mar 02, 2011 8:04 pm

I should've mentioned that I agree with everything you said, CURE, particularly about IVUS and patients who can afford to wait, but only quibbled about the exact percentages, and I also agree with what you just said, very well put, that it's what's not said that causes the most debate! Dake's initial patients won't be published on, because of no irb oversight, so we won't ever get the exact numbers, and that's a shame because you guys are the ones with the longest time since the procedure and with good follow-up as compared to some medical tourism situations.
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Postby gibbledygook » Thu Mar 03, 2011 3:48 am

Not only may have Professor Dake missed azygous involvement but he definitely missed valve problems in both my jugular veins which I will have treated in May. I suspect that the Dake patients need to have more investigations to ensure that all the veins are properly opened.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby CureOrBust » Thu Mar 03, 2011 5:24 am

In May, will they be using IVUS?
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Postby gibbledygook » Thu Mar 03, 2011 5:36 am

Hi Cureo!
I'm not sure what an IVUS is. I do know they were trained at Ferrera and are using an intravenous doppler to scan the veins very thoroughly and that they have found about 95% have azygous vein problems. The scans of my jugulars were incredibly well done and Professor Dake was impressed when he saw these dopplers. I expect that he will be pleased that I will have further treatment in May.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Sounds like reasonable data

Postby MarkW » Thu Mar 03, 2011 7:12 am

If 15% represent 'no long term benefit' that sounds like a good result for an initial study to me. If I saw a report with 100% showing long term benefit I would be suspicious of the research - its down to scientific training.

At this stage there is no definitive published paper on where to look for stenosis or valve issues in pwMS. Logically some problems will be missed cos the doctor has not looked at that area.

We are early in the development of de-stenosis therapy.

MarkW
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Postby 1eye » Thu Mar 03, 2011 7:49 am

you probably know by now, IVUS = intravenous Doppler (ultrasound)
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Postby bruce123 » Thu Mar 03, 2011 8:05 am

Cece wrote: Dake's initial patients won't be published on, because of no irb oversight, so we won't ever get the exact numbers, and that's a shame because you guys are the ones with the longest time since the procedure and with good follow-up as compared to some medical tourism situations.


I'm not sure of the rules but I don't see why Dr. Drake can't publish a paper without irb approval. The paper would simply state what he found and I assume he would also state that the findings were not part of an approved study. I have attended many scientific conferences and every presentation is published in the conference proceedings. I assume that the proceedings of the CCSVI conferences are also published as conference proceedings.

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Postby Leonard » Thu Mar 03, 2011 8:16 am

I recognise this as well, it does not sustain, not all of it. But I am convinced that by liberating the neck veins I have overcome the MS. The problem now is different and has in my view to do with the feeding of the cells. In a way, a stronger blood flow may even make thing such as sugar poisoning of the BBB worse, increase the secretion of Endothelin1 etc with possibly consequential detrimental effects.

As wheelchairkamikaze wrote: .. there's the distinct possibility that what we call Multiple Sclerosis isn't really one disease at all, but rather a collection of similar diseases that share symptomatic and diagnostic profiles.
http://www.wheelchairkamikaze.com/2011/ ... rbole.html

So the liberation from the venous insufficiency in the neck is only one part of the story; for some of us, the genetic predisposition for diabetes 2 is an issue. see also
http://findarticles.com/p/articles/mi_m ... _97390042/
http://www.ivanhoe.com/channels/p_chann ... ryid=11042

The challenge on us and public fora like these is to put and keep the pressure on, to speed up things, and to make sure neuro's, vascular specialists and endocrinologists (diabetologists) work together..
see also http://www.thisisms.com/ftopict-15188.html
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