CCSVI-Does it really help?

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

CCSVI-Does it really help?

Postby Daisy3 » Thu May 13, 2010 4:07 am

I've been reading the accounts that people have put on here and the findings seem to be all over the place! Some people get better only to lose those benefits a short while later. Others don't get better at all.
Some people get better and stay better. Or so it seems. The procedures on those guys have not been that long.

I don't want to be a sceptic, but neither do I want to be totally disappointed if my husband does this and it does not work for him.

I'm not quite sure what to think anymore :cry:
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Postby Perky » Thu May 13, 2010 5:36 am

I agree. I am sure there is something in the CCSVI theory and I am eager for more research to be done, but the reports on the tracking thread certainly don't persuade me to part with £5,000+ for liberation through the EHC. The results are just too hit and miss, and some people have even ended up worse after liberation.

I am clinging to the hope that CCSVI is real and will be the answer for most of us, and that the reason for the wildly different liberation experiences is the lack of experience of the doctors involved, and that this will improve as more procedures are done and more is understood.
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Postby Asher » Thu May 13, 2010 6:08 am

I believe that in order to come to some preliminary conclusion it is essential to make a few distinctions. The most important one being cause and effect.

It is not blood flow that is causing neural damage. CCSVI probably triggers inflammation, which in turn triggers damage and an abnormal immune response. Treating CCSVI may break this causal chain and prevent or significantly slow progression of neural damage. But this is not to say that all the symptoms that are directly caused by accumulated and sustained neural damage will disappear in some mysterious manner. Some repair may take place over a longer period of time, and some may prove irreversible.

Now some people report immediate effect on symptoms. Assuming these are real, and not placebo, these may be some of the symptoms that are directly correlated with blood flow. It seems very logical to assume that impaired blood flow in the brain plays a key role in fatigue, brain fog, vertigo, heat tolerance and cold hands & feet.

Having said all of this, MS manifests in many different ways in different people. You are perfectly right to approach any therapy with a fair amount of realism (not skepticism). CCSVI treatment does not come cheap, but currently it is the only game in town that does seem to work, to some degree or another, for many people. I for one, opt for it.
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Postby Daisy3 » Thu May 13, 2010 6:32 am

Asher wrote:I believe that in order to come to some preliminary conclusion it is essential to make a few distinctions. The most important one being cause and effect.

It is not blood flow that is causing neural damage. CCSVI probably triggers inflammation, which in turn triggers damage and an abnormal immune response. Treating CCSVI may break this causal chain and prevent or significantly slow progression of neural damage. But this is not to say that all the symptoms that are directly caused by accumulated and sustained neural damage will disappear in some mysterious manner. Some repair may take place over a longer period of time, and some may prove irreversible.

Now some people report immediate effect on symptoms. Assuming these are real, and not placebo, these may be some of the symptoms that are directly correlated with blood flow. It seems very logical to assume that impaired blood flow in the brain plays a key role in fatigue, brain fog, vertigo, heat tolerance and cold hands & feet.

Having said all of this, MS manifests in many different ways in different people. You are perfectly right to approach any therapy with a fair amount of realism (not skepticism). CCSVI treatment does not come cheap, but currently it is the only game in town that does seem to work, to some degree or another, for many people. I for one, opt for it.



'To some degree or another'. That's the problem.

I am not saying we would not do it. I do wonder how we would cope with the dissapointment of getting no benefit.
Thats life I guess.
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Postby bretzke » Thu May 13, 2010 6:51 am

Perky wrote:I agree. I am sure there is something in the CCSVI theory and I am eager for more research to be done, but the reports on the tracking thread certainly don't persuade me to part with £5,000+ for liberation through the EHC. The results are just too hit and miss, and some people have even ended up worse after liberation.


Perky-

Zamboni found the Liberation treatment was not very effective for folks with the most advanced forms of MS. Many of the "miss" results are coming from more advanced patients. They are simply hoping to stop progression, not necessarily experience immediate improvement.

As a matter of fact, if Liberation could slow progression in at least 30% of patients it would be considered a successful procedure. Any improvement would be a bonus.
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Postby Daisy3 » Thu May 13, 2010 7:37 am

bretzke wrote:
Perky wrote:I agree. I am sure there is something in the CCSVI theory and I am eager for more research to be done, but the reports on the tracking thread certainly don't persuade me to part with £5,000+ for liberation through the EHC. The results are just too hit and miss, and some people have even ended up worse after liberation.


Perky-

Zamboni found the Liberation treatment was not very effective for folks with the most advanced forms of MS. Many of the "miss" results are coming from more advanced patients. They are simply hoping to stop progression, not necessarily experience immediate improvement.

As a matter of fact, if Liberation could slow progression in at least 30% of patients it would be considered a successful procedure. Any improvement would be a bonus.



The frustrating part is that we won't really know if progression has been slowed or stopped for a good few years yet.
It's great that we have this option, it's not so great that we have to have faith taht it might help us.
If it's all we have though..
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Postby sbr487 » Thu May 13, 2010 7:39 am

Daisy3 wrote:
Asher wrote:I believe that in order to come to some preliminary conclusion it is essential to make a few distinctions. The most important one being cause and effect.

It is not blood flow that is causing neural damage. CCSVI probably triggers inflammation, which in turn triggers damage and an abnormal immune response. Treating CCSVI may break this causal chain and prevent or significantly slow progression of neural damage. But this is not to say that all the symptoms that are directly caused by accumulated and sustained neural damage will disappear in some mysterious manner. Some repair may take place over a longer period of time, and some may prove irreversible.

Now some people report immediate effect on symptoms. Assuming these are real, and not placebo, these may be some of the symptoms that are directly correlated with blood flow. It seems very logical to assume that impaired blood flow in the brain plays a key role in fatigue, brain fog, vertigo, heat tolerance and cold hands & feet.

Having said all of this, MS manifests in many different ways in different people. You are perfectly right to approach any therapy with a fair amount of realism (not skepticism). CCSVI treatment does not come cheap, but currently it is the only game in town that does seem to work, to some degree or another, for many people. I for one, opt for it.



'To some degree or another'. That's the problem.

I am not saying we would not do it. I do wonder how we would cope with the dissapointment of getting no benefit.
Thats life I guess.


Daisy, the point you are missing is the fact that all about CCSVI is currently in a very dynamic state since we are currently in a discovery phase. There are quite a few unknowns and with every procedure Drs are learning. In a few years, the success rate will be higher, for sure. This is the case with any new method. Its only the pioneers who are going forward and trying out.

My wish list in CCSVI research is as follows:
1) co relate clearly MS issues with stenosis in different locations
2) study what causes major issues and which ones are benign
3) study if correcting certain type of stenosis creates more issues
4) understand what type of stenosis are treatable by baloon and what type by stents
5) And the big one is come up with more safer stents

Note the failure of procedure in providing relief to some patients does not mean failure of CCSVI. It is just lack of clear knowledge about CCSVI.
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