This Is MS Multiple Sclerosis Community: Knowledge & Support

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Lyon, "So if it's an already proven, known disease that is covered by insurance where is the rub and why isn't the medical field aware of this? "...

The issue is that MS patients aren't individuals, they are lumped into a group that has specific treatments and physicians who are supposed to be the gatekeepers for the appropriate treatments they receive. Getting something done that is outside that box of accepted knowledge is a barrier w/r to CCSVI.

I don't know why, but this issue kept me awake half the night. Why in the world won't they offer the treatment? We know improved brain circulation is a good thing. We know balooning choked off vessels helps brain circulation. They didn't need doule blind studies to start balooning the brain arteries for stroke patients and arterial sclerotic patients, etc. This is not a drug, it is a surgical procedure for which the rules and procedures are very different.

I even think insurance companies should pay for the surgical procedure with known benefits, although I can see the point that if it is done for treatment of MS, we don't really have enough info to qualify for insurance payment yet.

I guess the Neuros have been involved in drug trials for the past 30 years, so that is naturally what they are thinking about.

BTW, even if we are willing to be the 1% who get involved in trials, there are no trials right now, and when there are some trials going, many of us will not qualify to be in the trials. Ath the recent seminar, Zamboni actually adressed that and said the treatment ought to be offered to such patients.

The question is; what is the right thing for the MS patient!
Of course it would be absolutley superb if everything was tried and tested, that there was a proven link, and unison agreement of the best possible minimal risk procedure to set it straight.

But who is the MS patient, we are not ONE unison group! One year ago, I'm sure my choice would have been to wait for tests, and stents designed for the venous system. Those who are doing well can choose that option.
Those of us who have more problems, problems increasing evry month, we do not have that option. If this is one thing that would make life better for us, should we wait to be beyond repair?
The two ethical problems here are totaly different. Calculating risks are totally different.

You see it with a drug like Tysabri, you need to have a more agressive sort of MS to be offered the drug. They cut slack when it comes to safety, because of the lack of alternatives.
Maybe now with CCSIV they should lower the limit to when it is considered proven, depending on the agressivness of the disease. Maybe the health incuranse should say we accept the result of the pilot studies for the patients with such an agressive disease that they qualify for tysabri.

We are a short of choices here, some of us!

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<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>

Bob, stop bothering people and stop making web pages, if you know what I mean.

Please don't tell me that your idea of discourse on the topic of CCSVI includes threats? You do realize you have an audience on a public forum, right? An audience interested in learning about CCSVI?





It is a real pity when people can't discuss/debate a theory but instead resort to threats/personal attacks. It does such a disservice to a position when people resort to such distractionary measures. I am sure there are many many people like me who are cautious about CCSVI, who are left with questions, who have concerns, who would like to explore the merits/weaknesses of a new theory before coming to any conclusion about what they think about it. I want to LEARN and I want to have a healthy, respectful debate. I want to talk about weaknesses because I don't want to ignore the parts that don't fit "nicely", and I really enjoy it when doctors supporting CCSVI can answer the hard questions. I remain open-minded. I want to be confident and I want the evidence to convince me. Using generalizations (ALL neuros, ALL MSer's, NO liberated MSers, we're ALL "naysayers" etc.) doesn't help me at all. I want details and I want to know facts.

However, I am made even more suspicious about the validity of this theory when people go off-topic and start making it personal and petty. I become very disappointed because I end up feeling even LESS inclined to support it, not because it doesn't have merit, but simply because of HOW the people who support it are addressing it and those with critical questions. It completely turns me off and makes me less open-minded. You then stop being an advocate and you become a liability when you end up turning people against it.

I hope people will keep this in mind - they do their "cause" an absolute disservice when they can't debate the theory on its own merits but instead resort to these kinds of comments above. If your point is to gather support, you aren't helping. You are going to turn people off, not because the theory may not have merit, but because of how the message is being delivered. I know that I feel LESS supportive, hell, I often feel like I need to defend neurologists who aren't all the "bad" guys. I'm also not a "naysayer", I'm trying to be realistic. In conclusion, you are turning people AGAINST your position simply because you stop arguing your case on its merits and start making generalizations and making it personal attacks.

Not everyone does this, but I hope people will think about it before responding in a personally insulting way. I really don't want to have to defend neuro's.

This thread is getting more interesting than a soap opera !!!

ozarkcanoer

I'd like to know this too. I haven't heard of a single person who was in the Buffalo trial who had CCSVI but was in the "normal control" group being urged to have treatment. Why is this? Maybe it is true what vascular surgeons said to my doctor, anomalies in the venous system don't necessarily MEAN something bad since the system is so repetitive.

It seems to me that CCSVI in and of itself is not considered to cause an unhealthy state. Otherwise wouldn't the healthy controls with CCSVI be rushing in for treatment?

I think that that is really what this comes down to - does CCSVI create poor health? It doesn't appear to in the healthy group. I think this is why we need a trial. We need objective evidence that treating CCSVI in the MS population results in measurable health improvements. It has to be demonstrated that correcting CCSVI does something helpful for the patient.

Snicker.

I always found them (soap operas) to be insipid.

Some become better writers when they are drunk (Think Hemingway). Others, not so much.

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My name is not really Johnson. MSed up since 1993

Here's an example from cardiology, from my own experience, that may show how this could be applied to CCSVI. I had an accessory pathway in my heart, a congenital abnormality that didn't cause symptoms until I was older and something triggered it; we will never know what. The cardiologist I went to said people who have this recognized congenital defect have a range of symptoms, and some people do not present for treatment and some people experience life-threatening arrhythmias.

I ended up having a procedure very similar to the liberation procedure, in which a catheter was threaded through my blood vessels and advanced into my heart, where the problem area was identified and burned away.

So I can completely relate to the concept of having a physical defect that would have a wide range of expressions, from no symptoms to extreme symptoms.

Johnson,

Yes... soaps are insipid... and the CCSVI story for better or for worse will make a good story in 10 years time. Sometimes the personalities of the people here on TIMS just make my brain spin... You know, motivation etc etc ??!! There is so much hope and anger and hubris and anxiety emanating from some of these threads that tell a very human story. Actually seems like good material for a Greek tragedy. Let's hope that it is not a tragedy for MSers.

ozarkcanoer

Interesting bluesky,

So let me ask you - regardless of whether this condition of yours expresses negative health symptoms, if it is identified, is it ALWAYS treated? Because we're trying to figure out why CCSVI isn't automatically considered a condition that requires treatment. Is your condition always treated when identified, regardless of whether it's causing symptoms? If so, why do YOU think there is resistance in identifying and treating CCSVI when identified. Is it because there are no known group of symptoms that can be attributed to CCSVI at this point?

In turn, you raise an interesting point, eric.

It is a known quantity what happens to organs (and skin - such as venous ulcers on the ankle) when blood outflow is restricted, it only seems reasonable to extrapolate to the arguably more critical, and delicate organ that is the brain. There is observed inflammation and scarring, atrophy, and a host of neurological dysfunction. There is little hesitation for Budd-Chiari, renal vein occlusion, deep veins in the leg, etc. There is little squeamishness in doing arteries within the brain, etc.

I think that it is an academic exercise involving relationships between MS and CCSVI. Meanwhile, a recognized, and treatable pathology is ignored. Remember that MS is thought to be an auto-immune disorder. There is no proof of that, yet it is treated as such. There is a disconnect in approaches.

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My name is not really Johnson. MSed up since 1993

But taking that part out of the equation, why would an interventional radiologist or vascular surgeon care at all about anything else but venous occlusions, and treat it as such, regardless of whatever else is swirling around it?

I understand why neurologists might want some solid evidence to change the paradigm that MS has always been viewed under. But why would those skilled in vascular interventions care at all about anything but blocked vessel = unblocking it. Their specialty is venous flow so if something is blocking it, you'd think they'd have no qualms in unblocking it. Unless you actually need to show that the blockage is creating dysfunction in the body since a blocked vein in and of itself isn't meaningful without a corresponding problem associated with it.

It is especially troublesome that some people get asymptomatic CCSVI, unless you think, as I do, that reflux comes from the heart, and lo and behold, many people with TI (as well as Remitted MS and CIS patients) are asymptomatic. I also believe that reflux becomes more and more of a problem as you age; the reflux damage mounts, until it kills you (if it continues, and becomes a strengthening stream of 'recirculating exhaust').

People that get, and are treated for, TI (if I am right) would be protected from MS. But if they have CCSVI and are not treated for either, I wouldn't put money on *them* not getting MS.

I have also said and continue to believe, that before the 'scandal of 2010' is going to be resolved, more people will have to die. Barak's father-in-law dying just won't quite convince enough people. There, we're in the same boat as survivors of traffic accidents waiting for a new traffic light. More people will have to die.

I have had this problem a lot longer than many I have heard from here. Doctors like some we know, in spite of all they have done for us over all these years, have never actually had MS -- I am not saying you have to have it yourself to have empathy or motivation to help people, but for some it would help if they had had it themselves, even for one day.

They might at least stop calling others desperadoes. We always have hope, some more than others.

I have seen the Aimspro debate. And the LDN debate. And a few others. (It has been a long time, hasn't it?) I strongly recommend the apocryphal, anecdotal experience of actually meeting or hearing speeches made by Liberated people who have had improvements. I have also seen MSers' MRVs and venograms and Doppler ultrasounds, but there's *nothing* like seeing the results of Liberation with your own eyes. Put your hand into the wounds. You cannot deny that that many people have had this result. Wait until we start hearing about the (latest) Kuwaiti Liberation.

It is not some theoretical debate to me. I don't need to see any more evidence myself. What is the cause of CCSVI is more important to me now. Even after I get treated I may not walk again. I'll be grateful for less progression, even for a while. I am all in favor of more research, though as more people get Liberated, it's going to be harder to find subjects or money, since the priorities will shift to more lucrative areas. I despair if anyone makes any reproducible, real progress that isn't costly, in Cancer research. Now *there* is a franchise.

Don't believe Zamboni. Or any other physician. Just believe the ones who have had results (good, bad, no change, restenosed). If it were not for the neurologists' refusal, we could be counting these, but right now it seems prudent not to publicize any unsanctioned programs.

Hi, Doctor Brandes. Appreciate what you've said in the magazine. Hope it makes a difference where it counts.