This Is MS Multiple Sclerosis Community: Knowledge & Support

I am tired of hearing that CCSVI needs more testing. For what? To find the relationship between CCSVI an MS. The issue here is the stenosis in the neck. Our human rights are being violated here. Lawyers need to get involved. Its difficult for me to understand why CCSVI is being directly associated with MS by the MS Society and neuros. Well actually its not, ego, pride, money and big pharm have a lot to do with it. CCSVI is a totally separate issue that needs to be addressed. If you took MS out of the equation there would not be a concern.

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STAY REAL MY FRIENDS

dx 1989, spms

Interesting...I bet you could even get a lawyer for free if it looked like it would be a booster personally for them to get the press.

You are right, and we are pushing the issue. I do not think it will be very long before we can have intervention at home. The people who are liberated, and have benefit, will have a big part to play. I am going to Poland, and when I return (if I have benefit), I intend to take the BC Government to court to recoup the costs - including travel. Of course, I will attempt to get treatment here first, but I am not doing a Valsalva over it. If I end up going to court, I will call the media hounds in. Of that, you can be sure.

It's not discrimination though. There must be clinical studies to tie CCSVI to MS. The "proof" really is anecdotal, no matter how compelling, BUT, pathological veins are real, and require treatment, and no clinical study is required for that, in my humble opinion. If treatment for the vein problems is refused because I have MS, I will have a human rights case.

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My name is not really Johnson. MSed up since 1993

agreed Johnson and your journey to Poland will be a positive one i am sure of that.

_________________
STAY REAL MY FRIENDS

dx 1989, spms

I agree Markus! But Johnson, I don't think that they need to show that CCSVI is tied to MS - it should be enough to know whether treating CCSVI helps alleviate some MS symptoms. Lots of medications are approved without knowing their exact mechanism of action.

I think that we know enough now, at least with angioplasty, which is purportedly low risk. The stumbling block seems to be how to do a double blind study with a surgical procedure. But I think that that is a red herring - there must be limitations on the placebo effect such that, past a certain point, agreement can be reached as to whether the improvements are real. I know the placebo effect can be powerful, particularly in MS, but come on...sometimes too much logic can become illogical!

I agree with Dr Zamboni when he said "do the studies, but also treat patients now"!

Johnson and markus77, I agree with you 100%,
I had the procedure in Poland 10 days ago. Doctor Simka and the team are not promising MS cure, just treating the present vein problems. All of the patients in Poland were diagnosed with CCSVI through MRV and Doppler scans. Oh, yes patients were sick of MS as well. No need for the study to help people. I have to talk too

xxx

In order to get scans, under the medical services plan, the link will have to be made - by studies. I can not get the scans under insurance (because of the lack of an accepted link from MS - CCSVI, not CCSVI - MS symptoms), so I paid for them. If the Doppler and MRV prove conclusively that I have CCSVI, there is no doubt that I need to be treated. If I am treated, and have relief, there is another anecdotal case of the link, but not proven.

It's a chicken-and-egg thing to the bureaucrats. Think Tweedle-Dum, and Tweedle-Dee...

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My name is not really Johnson. MSed up since 1993

...there must be some lawyers out there with MS in their lives??? i agree completely.. how is our healthcare system getting away with this? MS or not.. stenosis in a significant vein is a problem that needs to be resolved. Not.. "don't worry your body will compensate for the problem"! they don't know that and it is only assumed to be true... the vascular surgeon i was able to see, although unwilling to help, admitted that vascular systems were somewhat unexplored and considered to play a minor role in in the quest for good health. He said even if there was proof he would have a lot of studying to do before he could participate in the treatment.

The Buffalo study found that many healthy controls also had blockages in their veins. MSer's just had much more of an incidence of it.

Blockages don't mean anything unless it can be shown that alleviating the blockages somehow improves the health of patients. After all, apparently the healthy subjects with CCSVI are living just fine with their blockages.

We need research to show that removing the blockages is:

1) safe and enduring
2) improves our health

Personally, I don't think the government should be paying for testing or treatment when there's no evidence yet that:

1) CCSVI is the cause of any problems
2) alleviating the blockages improves our health
3) treatment methods are safe and enduring

With 50% of the balloons failing, and stents being at risk for migration, we need a lot more information before I'd feel comfortable with the government funding our care in this way. We need to be able to trust that our government provides us with a high level of care. The research into CCSVI just isn't there yet for the government to be paying for testing for it. We have absolutely no idea yet whether CCSVI is even the cause of any physical problems so why would the government fund testing for it?

We aren't being discriminated against. The government does not fund diagnostics for ANYONE with conditions that have not been shown to negatively affect health. Whether we have CCSVI or not is irrelevant unless it can be connected to health problems and alleviating it will benefit us somehow. There's just no evidence of that yet. When there's evidence of that, then I'll be a placard-waving protester too demanding government funding. I don't want the government to pay for me to be tested. I want the government to pay for the research to determine whether or not there's any merit in this area.

i only have this to say about that...
...as far as the congenital nature of these truncular venous malformations, that came from Dr. Zamboni's research in Sardinia in the 1980's- where he first noticed jugular venous stenosis in several children and followed them into adulthood. 20 years later, 90% of them had MS. Dr. Lee and a panel of 47 vascular experts went over the research and made the congenital ruling.

Correlation does not = causation

There appears to be a strong association between MS and CCSVI. But that doesn't mean one caused the other or that one affects the other in any way. For all we know CCSVI and MS are just two conditions that occur together. A cause/effect has not been established yet. We desperately need a study to show that REMOVING CCSVI improves the neurological condition of those with MS.

..are past and current research enough? seems to me that everyone wants this done 'their way' .. also..will there have to be a correlation between CCSVI and MS to receive treatment? What if the only benefit is relief of cognitive impairment or bladder issues or decrease in relapse? will someone somewhere decide if these issues are individually worthy of resolve?

Sometime it is better to take a common sense approach and think that proper blood flow to brain is essential. Delink MS from CCSVI and think.

It would be rather difficult to prove that these people who are "healthy" are indeed healthy. That would require to wait another 15 years to see if the develop any kind of neuro symptoms.



Most of the CCSVI critics tend to say that using stents or balloon is not safe when they want to bash CCSVI. Are they saying that CCSVI is indeed a fact but the method to treat it is not?



Able to walk hours after surgery, no brain fog and more importantly no new lesions until veins are open are probably not what you are looking for.



The current research engine is completely driven by corporates. According to you who should fund this research. The MS patients, I believe.



I suggest you spend next one month studying some of the research papers on CCSVI unless you are here with an agenda.



Its pretty simple. The govt:
1) govt should oversee the systems
2) correct flaws in the systems
3) step in if system fails

In case of CCSVI, point 3 is the reason why govt should intervene. Lets not get confused with semantics as to what govt should or should not do. Taking care of its people its primary job.

I agree. That's why I don't think the government should pay for diagnosing individual cases of CCSVI at this time. I believe the government does not "take care" of its people by throwing our money at every patient who wants testing when there's no unbiased, objective research to support it. We would be broke if the government tested every patient for whatever they wanted, just because there were personal accounts of "healing". That's why we have scientific method. The government would be giving a lot of money to snake oil salesmen if they didn't have an objective evidence standard that had to be met first.



I have delinked MS from CCSVI and thought a great deal, actually. I want to be fixed as badly as the next MSer. I just don't throw out caution and objective scientific method because someone says something is a "good thing". I think my approach is more common sense and realistic than that.



Actually, Zamboni's research on congenital CCSVI already waited 20 years and showed that 10% of the people who had CCSVI at birth did not develop MS later on. So they apparently lived quite well with CCSVI without incident. Further, IJ valve insufficiency (with reflux) was found in 25% of the healthy controls in this small study, and in 79.5% of those with Transient Global Amnesia. None of them to my knowledge had MS.

http://stroke.ahajournals.org/cgi/conte ... ct/41/1/67

The Buffalo research further supports that people can have CCSVI and not have MS as 25% of the healthy controls had CCSVI but did not have MS. It appears that CCSVI doesn't always cause something or "have" to be fixed. Furthermore, just because two conditions are related doesn't mean there's a cause and effect. Perhaps CCSVI is a comorbidity of MS. That doesn't mean fixing CCSVI does anything for MS. It doesn't mean that it doesn't either. I'd like a study to answer that before the government pays to test 50,000 MSer's for CCSVI out of our tax dollars. I'd like the government to pay to answer the question of whether CCSVI affects MS before they pay for individual diagnoses of CCSVI. I don't understand why that is so shocking or offensive to you.



I don't really understand your question. I am not a CCSVI critic, I am a huge supporter of continuing research into determining CCSVI's effect on MS. Clearly if CCSVI is found to impact demyelination, we need a good treatment. Why would anyone be applauding a 50% treatment failure rate with balloons or not want to reduce the risk of stent migration? All you have to be is an MSer to want better treatment options. You don't need to be a CCSVI critic to want a treatment that had a lower failure rate.




That's anecdotal and anyone who has followed MS research is well aware of the significant placebo effect involved in MS treatment trials. Did you see how large the placebo effect was for Tysabri, Novantrone and CRAB's? And I haven't read any MRI reports post-CCSVI treatment showing no new lesions. Could you point me to where they are? Can you tell me what the placebo effect for CCSVI treatment is and what effect can be attributed to intervention? No. Why? Because unfortunately no one knows what is placebo effect and what is attributable to intervention. If we simply shrugged off scientific method and proper research trials to determine the efficacy of treatments, we (and our government) would be broke. And our spirits would be broken too. That's why we NEED trials to determine whether CCSVI interventions positively affect MS.



I'd like the government, stent and balloon manufacturers, universities, MS societies, etc. to fund research. Why would you ever think I'd want the MS patient to fund it? I haven't made any such suggestion! That is really unfair to suggest that. I merely want the government to fund research to confirm CCSVI's link to MS and the effect of interventions before funding individual CCSVI diagnoses.



Point me towards one research paper that shows objective evidence and not anecdotal of improvement/stabilization of MS by alleviating CCSVI. All I've read are accounts of vague improvements, nothing objective.

I want research done before the government starts funding individual diagnoses of CCSVI when we have no objective evidence that eradicating CCSVI impacts MS at all. I'd rather the money go towards PROVING by scientific method that removing CCSVI improves MS. I don't think that means I have an "agenda" other than an appreciation for evidence-based medicine and an acknowledgement that we have limited government funds and those funds should only be spent on diagnosis and treatment of conditions that are backed by validating, supporting, objective research.