edss not a good marker for ccsvi research studies

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

Postby 1eye » Sat Mar 26, 2011 9:59 am

I think people who think that fatigue is the worst of their symptoms can probably still walk.

However, aside from EDSS being only a measure of that one disability among quite a lot, fatigue is important too. When I was in Rehab, I met a woman there, to whom I complained that we didn't have any air-conditioning. Poor me, I was getting all sweaty in physiotherapy. She told me she didn't have the energy to work up a sweat.

If your fatigue gets better you at least have a prayer because you can work on keeping up with atrophy. I have lost a lot of muscle mass. How much of that has been due to fatigue? Some has been due to pain. Maybe zero has been due directly to myelin damage? Who knows?

I cannot walk after 7 months post liberation, but I have more stamina, and I am building new muscle mass, and I hope to walk within the year. It's all connected.
"Try - Just A Little Bit Harder" - Janis Joplin
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Postby Liberation » Sat Mar 26, 2011 10:50 am

1eye wrote:I think people who think that fatigue is the worst of their symptoms can probably still walk.

However, aside from EDSS being only a measure of that one disability among quite a lot, fatigue is important too. When I was in Rehab, I met a woman there, to whom I complained that we didn't have any air-conditioning. Poor me, I was getting all sweaty in physiotherapy. She told me she didn't have the energy to work up a sweat.

If your fatigue gets better you at least have a prayer because you can work on keeping up with atrophy. I have lost a lot of muscle mass. How much of that has been due to fatigue? Some has been due to pain. Maybe zero has been due directly to myelin damage? Who knows?

I cannot walk after 7 months post liberation, but I have more stamina, and I am building new muscle mass, and I hope to walk within the year. It's all connected.


I really hope that you will walk in a year as you planned. That is what I call an improvement and that is what we should aim for. Eat whey protein isolate that helps you build up muscles. We can talk about any measurements, but I still belive that long-term benefits must be seen objectively. Whether it is getting able to walk, or to walk significantly more and at higher speed, or to do excercises without fautigue does not matter, the important thing is that you objectively see the difference and others can see it as well. I think CCSVI will have more merits if it can demostrate improvements in harder cases like mobility issues. Here, differences can be seen easily. If MS is about damages to you nerve cells (whether it is myelin or axon) then any cure should have an impact on motoric nerves not only on other nerve cells. And lets face it raises some questions if only those nerve cells show supposed improvements which can not be checked objectively by outside viewers. So, lets hope that we will see improvements with motoric nerves as well in the long term.
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Postby Jugular » Sat Mar 26, 2011 11:31 am

griff wrote: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.
I think a lot of what you are saying misses the point that many of those seeking treatment are hoping to prevent further damage and deterioration with thier motor function which is the usual standard against which MS treatments are measured.

To require that CCSVI treatment produce a disease reversal to be of value is setting the bar too high IMO. That being said, many patients who are treated have been reporting a disease reversal and it is important to measure this as well in well-designed clinical trials. More importantly though the treated's disease progression should be measured against controls.

As an aside, a walking distance measure is of limited value without measuring speed and observing gait. I could walk 200 m without my AFO before my procedure, I just wasn't very good at it. Since my procedure my timed 20 ft walk speed improved by 25%, my knee doesn't collapse inward, I'm not hiking up my hip nearly as much and am walking more level. These are things that can be measured but even still I think it is significant that I'm not slowly deteriorating as before.

To get some axon and myelin improved function after is a beautiful thing but we are likely going to need remylinating drugs to get us the rest of the way.
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Postby Cece » Sat Mar 26, 2011 12:11 pm

Jugular wrote:To require that CCSVI treatment produce a disease reversal to be of value is setting the bar too high IMO.

This hits the nail on the head, imo.

How do they measure results after superior vena cava syndrome is treated through venoplasty?

Dr. Dake's trial is measuring improvements in flow as a baseline result. Seems reasonable to me. I also think he is likely to be successful at showing that, when a blockage is removed, flow is improved.
I cannot walk after 7 months post liberation, but I have more stamina, and I am building new muscle mass, and I hope to walk within the year. It's all connected.

I think you will get there, 1eye, and I am hoping for a youtube video when you do. :)

Griff, I agree about the need for it to be measureable. In the first post in this thread, I quoted from an abstract or article out of ISNVD,which said that the edss was not the best at measuring the sort of results gotten from ccsvi treatment and that there were other validated measurements. It would be helpful to know what those might be, so that it's not just not looking at the edss score, but what should we look at in its place.
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Postby griff » Sat Mar 26, 2011 3:13 pm

Jugular wrote:
griff wrote: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.
I think a lot of what you are saying misses the point that many of those seeking treatment are hoping to prevent further damage and deterioration with thier motor function which is the usual standard against which MS treatments are measured.

To require that CCSVI treatment produce a disease reversal to be of value is setting the bar too high IMO. That being said, many patients who are treated have been reporting a disease reversal and it is important to measure this as well in well-designed clinical trials. More importantly though the treated's disease progression should be measured against controls.

As an aside, a walking distance measure is of limited value without measuring speed and observing gait. I could walk 200 m without my AFO before my procedure, I just wasn't very good at it. Since my procedure my timed 20 ft walk speed improved by 25%, my knee doesn't collapse inward, I'm not hiking up my hip nearly as much and am walking more level. These are things that can be measured but even still I think it is significant that I'm not slowly deteriorating as before.

To get some axon and myelin improved function after is a beautiful thing but we are likely going to need remylinating drugs to get us the rest of the way.


Jugular, you are fully right about stopping the progression. With ppms patients stopping progression is a success. I just quietly mention that it can be measured by edss. However, I do not wanna promote edss, what I am saying that we should meet objective criteria not just something that only the patient feels. By stopping the progression for ever we would hypotetically eliminate the cause. Of course, damage done to the nerve cells would be not be effected by this. As you rightly said it would be upto some remyelinating drug that is about 10-15 years away. However with RRMS patients motor function problems would be different as they are most likely not sufferred permanent damage. However, I must say that even neurologists do not know what is really going on with MS. Anyway, I would be more than happy if we could eliminate the cause of the MS and stop the progression. This would give us time to find a way to regenerate dead nerve cells. I hope this is not just a dream... :)
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Postby bluesky63 » Sun Mar 27, 2011 6:04 am

It's not just the patients -- most of the professionals within the MS community are not satisfied with the EDSS scale and its limitations.

Does EDSS take into account progressive blindness? deafness? seizures? complete disability due to cognitive dysfunction? Progressive paralysis of the arm/hand? One bad brainstem lesion that affects breathing and heartrate? These are valid disabilities, profoundly affecting the lives of the people who have these lesions, yet EDSS gives a higher score to a person who has one lesion making them unable to walk but is otherwise "OK" than to a person who experiences several other disabilities that can have a much more severe effect on daily life.

There is ongoing, active work to improve how disability is assessed and measured. This is a pretty good summary:

http://www.ncbi.nlm.nih.gov/pubmed/11756863

A more recent abstract:

http://www.ncbi.nlm.nih.gov/pubmed/21179614
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Postby David1949 » Sun Mar 27, 2011 5:29 pm

Why not quantify and track all of the common MS symptoms. That's what they do at CCSVI tracking http://ccsvi-tracking.com/

That way it would tell us what the treatment helps and what it doesn't help.
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Postby Cece » Sun Mar 27, 2011 6:05 pm

Changes in EDSS are over a longer period of time typically? I also am reminded that the CRABs are not measured by EDSS as an outcome factor and in fact the CRABs do not appear to have an impact on disability progression. They are measured by reduction of MRI lesions in patients with abnormally high and active numbers of lesions (who might therefore have particularly inflammatory MS and who are also likely to experience a regression to the mean effect). Reduction in lesions would be measureable, though. I am still so excited by what Dr. Hubbard presented at ISNVD. Improvements in cerebral perfusion as a result of venoplasty are immediate and measureable.

I wonder, before MRIs, what did MS researchers use as measureable factors?
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Postby David1949 » Sun Mar 27, 2011 8:37 pm

Cece wrote:.... I am still so excited by what Dr. Hubbard presented at ISNVD. Improvements in cerebral perfusion as a result of venoplasty are immediate and measureable.


To you and to me that's important info but as far as the mainstream medical community goes it doesn't prove that CCSVI has anything to do with MS. Nor does it prove that venoplasty will improve MS symptoms.

What we need is measurable proof that at least some MS symptoms can be improved by venoplasty. Without that, this treatment will go into the dust bin along with all the other MS cures that didn't pan out. Local IRBs might even ban it throughout the country. We need proof that it works.
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Postby griff » Tue Mar 29, 2011 3:27 am

I agree, we need measurable proof that at least some of the MS symptoms can be improved by venoplasty. If those nasty, useless drugs can fair well with the current neurological tests, then any new treatment claiming that it can cure this disease should do the same.
The problem is that most of the people including IRs do not even know the difference between ppms, spms, als and rrms. This way it will be hard to documemnt anything if they do not even know what to document. In case of a person with axonal loss you can not expect a recovery in mobility, but someone whose mobility problems stem from inflamation and not from axonal losses it could be. Do not forget that with CCSVI we are claiming not to treat the symptoms but to stop one of the cause of the disease. Could it be that we really just treat an accompaning cardiovascular disease and not ms? To me, it seems that fatigue, memory problems might have nothing to do with any neurological disorders (like MS), but they could be simply blood flow problems. So, when we treat these problems, we still have MS. To me it seems that as long as we can not stop progression in disability or vision, which are true neurological problems, I am not sure that ccsvi will have any merits with neurologist circles. It is also a question how long-lasting effects do we have with fatigue. I can understand those neurologists who heard the first news that a vascuar surgeon found the cure for ms and now what they can see is a few people whose fatigue that can not be objectively monitored in many cases improved. Do not forget that there are ups and downs with MS so just because you had some good days will not convince your neuro.
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Postby Cece » Tue Mar 29, 2011 11:08 am

Every person with MS is a person with axonal damage:

Acute axonal damage in multiple sclerosis is most extensive in early disease stages and decreases over time
http://brain.oxfordjournals.org/content ... 2202.short

Evidence of axonal damage in the early stages of multiple sclerosis and its relevance to disability.

www.ncbi.nlm.nih.gov/pubmed/11176938

It's why imo the outcomes post-venoplasty are so variable. We all have different degrees of damage (and we all have damage). We all have different levels of plasticity to recover from damage. We all have different degrees of successful restoration of the blood flow (or nonsuccessful). We all have different locations of damage, particularly the differences between spinal lesions and brain lesions. Even two years ago here at TIMS, the word cure was not being used.
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