edss not a good marker for ccsvi research studies

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

edss not a good marker for ccsvi research studies

Postby Cece » Thu Mar 17, 2011 10:49 pm

Prof Miro Denislic, a neurologist from Solvenia, presented their findings which, in keeping with several other papers, showed that improvements in fatigue were the most persistent benefits in patients after angioplasty. I (Dr Tom Gilhooly) presented our early findings from structured telephone questionnaires on 45 patients at one month post procedure. This shows 60% of patients reporting an improvement in quality of life and a similar percentage reporting an improvement in fatigue.
Another Polish paper showed no change in the EDSS score at 6 months but an improvement in fatigue. The EDSS ( Expanded Disability Status Score) relies very heavily on measuring motor function and does not appear to be sensitive enough to pick up improvements in many other areas such as sensation, bladder function and fatigue. It is doubtful if this tool will be useful in future studies as there are other validated research tools which are more sensitive.

http://us1.campaign-archive1.com/?u=646 ... ca3fe91&e=

Which other validated research tools might those be? With the EDSS, with it relying heavily on motor function, it does seem that motor function is not something that is as reliably improved post-procedure.
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Re: edss not a good marker for ccsvi research studies

Postby David1949 » Fri Mar 18, 2011 1:38 pm

Cece wrote:... it does seem that motor function is not something that is as reliably improved post-procedure.


That's not surprising and it's consistent with the results shown at CCSVI tracking. But it's kind of disappointing for those of us whose main problem is walking ability.
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Postby esta » Fri Mar 18, 2011 2:20 pm

in poland, where i received a stent, 2nd time round, i completed a much better form, which they use, and my improvements were substancial. the EDSS score never changed here.
i just have one thing to say and it has to do with my outlook on life -a wonderful sense of hope, and optomism for my future.
so, why isn't that posted anywhere on it. it changes everything!!!!!!!!!!!!!!!!!!!!!!!
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby rainer » Fri Mar 18, 2011 10:55 pm

Sounds like an excuse to dress-up unimpressive results as being the fault of the exam instead of the treatment. How very pharmaceutical like.
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Postby Lyon » Sat Mar 19, 2011 5:50 am

..
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Postby Cece » Sat Mar 19, 2011 12:53 pm

Mobility is very important. But as someone with a 0 - 0.5 EDSS, I was still disabled very specifically by the sudden harsh fatigue and also the overall general fatigue and the cogfog issues. If CCSVI is a treatment that is particularly good at treating the particular problems I have, then yes, yes, yes, pick the right way to measure that and get it tested, because the chance to alleviate this sort of suffering does not come along every day.
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Postby esta » Sat Mar 19, 2011 1:45 pm

ditto CeCe :D
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby CureIous » Sat Mar 19, 2011 5:27 pm

Cece wrote:Mobility is very important. But as someone with a 0 - 0.5 EDSS, I was still disabled very specifically by the sudden harsh fatigue and also the overall general fatigue and the cogfog issues. If CCSVI is a treatment that is particularly good at treating the particular problems I have, then yes, yes, yes, pick the right way to measure that and get it tested, because the chance to alleviate this sort of suffering does not come along every day.


I used to drag myself kicking and screaming into work every day. Now I jog in, run circles around the youngsters (i.e. 20 somethings seem young now), and run right back out, planning the next work day in my head.

If job performance is any measure of improvement, then I've improved greatly. All of that is specifically related to your aforementions, fatigue, cogfog, memory, not even a blip on the edss, but a real game changer nonetheless. Don't measure nothin, ask my foreman, who was my foreman on the last job I had 3 years ago, I remind HIM of what he needs to do/order/take care of now.....
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 David1949 » Mon Mar 21, 2011 11:20 am

There must be measurable results to determine whether the procedure is effective or not. If your vision improves from 20/40 to 20/30 that's a measurable result. If your ability to walk improves from 100 yards to 500 yards, that's measurable too. Brain lesions can be measured and counted. That's measurable. The number of relapses can be measured too. However, fatigue and brain fog are tougher to measure. You will have to use a subjective approach like saying that you feel 50% or 100% better. But that kind of result is subjective and prone to placebo effect. It would be very hard to defend as a scientific reality.
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Postby griff » Sat Mar 26, 2011 6:25 am

I believe if improvements can not be justified with EDSS score then we should forget about CCSVI procedure. It is very nice to hear about fautigue improvements and nice dreams, more energy, but all of these things depend on lots of other things, e.g. how much you slept the night before, what is your mood etc. Not to mention that with RRMS all these things vary by time. I think all of us are more afraid of mobility and vision issues than of not having a nice picturesque dream. Improvements in fatuigue etc. are also important but I do not think these should be worth the risk of playing around with veins close to the brain and heart. We already heard about lots of thrombosis, intimal hyperplasia, problems with missing veins, etc
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Postby Cece » Sat Mar 26, 2011 7:27 am

griff wrote:As I said if something is claimed to be a better treatment option than the current drugs then it should show better results with EDSS as MS is not about having picturesque dreams and temporary fautigue. I think many of us would be happy if those would be our only problems.

I feel you are minimizing the issue of fatigue.

There are different types of MS for different people. Temporary is not the word for my fatigue, would that it were so. Mine has been disabling, present for my entire adult life, worsening, and severe. Incoherent, swooning, scary fatigue. It would be nice if there were a different word for it. The term 'fatigue' makes people think they know what is being talked about and can relate.

I do agree about the two years of experience with CCSVI treatment and that we should be seeing more data. Dr. Zamboni has published on his. Dr. Simka had some presented at ISNVD, as did Dr. Mehta having presented on his 4-month updates from his trial-in-progress. Dr. Dake presented on his 1-year results at ISET.

David, yes, measureable results. What Dr. Hubbard is showing with the fMRI is really exciting in that regard. I do concede that fatigue is not easily measureable, despite being for some of us far too real and disabling.
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Postby Jugular » Sat Mar 26, 2011 7:54 am

griff wrote: As I said if something is claimed to be a better treatment option than the current drugs then it should show better results with EDSS as MS is not about having picturesque dreams and temporary fautigue. I think many of us would be happy if those would be our only problems. If that is the only thing that CCSVI procedure can show up than the trials should be done with animals and we should wait for the results.
You must be joking. To me fatique and cognition problems are of the most serious of MS. Liberation would be the break-through treatment of the century if it improves these conditions for MS patients. I also think that EDSS is a poor measuring tool for disability. I was confused taking the test before and after as to where I would be placed because the criteria seemed to be overly subjective and difficult to apply. They came up with much better objective measurements when they tested the mice. In my case I went to see a physiotherapist to take a series of objective tests and measurements before and after as well as to follow my progress.
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Only EDSS

Postby fiddler » Sat Mar 26, 2011 8:14 am

EDSS as a sole or main measurement of MS severity was discredited a long time ago, so why should it suddenly be the only measure of improvement after any kind of treatment? That would be absolutely foolish, something that would be done only by a technician who has no real understanding of the great disability and reduction in quality of life caused by fatigue, cog-fog, bladder problems, pain, etc.

In my case, my EDSS has improved a bit since liberation, enough that now I use my cane only in places like airports (until the the procedure I was steadily getting worse, using the cane everywhere, expecting to be in a wheelchair soon). However, it has been the tremendous improvement in energy levels that has made the biggest change in my quality of life. Of course, the only "objective" measure for that symptom is that I have no or only one nap a day instead of four, but since that is a consistent improvement that has endured for over ten months, I feel safe to say that it is not only because I had a good night's sleep. In fact, my sleep patterns don't appear to have changed (except that I may be waking up more refreshed).

In fact, self-reported results on http://www.ccsvi-tracking.com do show that over 50% of liberated people do see some improvement in EDSS, but even if that were not the case, saying the CCSVI procedure should be dismissed if it doesn't improve EDSS in everyone is just plain uninformed.
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Postby griff » Sat Mar 26, 2011 8:58 am

I did not want to disparage any of your problems with fatigue, but I just think that we should have objective measurements of our improvements and we sould not forget that they are doing a not well-documented trial on us and we pay the bill. So, I think we should weigh the pros and cons when we allow such a thing to be done without clinical trial. I am much more upset about the fact that many of the CCSVI clinics are not monitoring patients after the operation and this way i think we get nowhere. We all know that lots of improvements are needed in techniques and more veins should be checked and relation between location of the laesios and veins should be examined, risk of thrombosis, intimal hyperplasia and destroyed valves should be determined, but any of these can not be done without proper monitoring and care. I miss these. I think the current situation is quite comfortable for ccsvi clinics because they get the big bucks without setting any proper measurements of their work. So this is why I would like to get a hard measure like EDSS. My neurologist told me that even with pain if I beleive that something can ease it I will have no pain. However, if someone can walk 200 meters only, just because he believes he can run, he still will not. I see the IRs are pulling awy from the big job that requires hard evidence. As far as I know only dr Sclafani examines lumbar veins that is more likely to be associated with mobility problems.
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Agree

Postby fiddler » Sat Mar 26, 2011 9:54 am

I understand and mostly agree with what you are saying there, griff, but not what you said (or I thought you meant) in the earlier posting about EDSS being the only measure. By the way, I should have mentioned that there are other objective measures (particularly related to balance and strength) in tests taken by my physiotherapist before and after liberation where she has noted improvements. My neurologist has also noted a small improvement in my coordination and mobility.

Besides the problem with EDSS focusing mostly on mobility, it is also a pretty course measure. For someone with mobility problems, you can see quite an improvement and have your 5.5 score not change, for example.

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