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

Postby costumenastional » Wed Mar 31, 2010 11:36 pm

I dont believe there is such a think like placebo effect. I dont believe an ms patient would ever go public saying that he /she feels better if this wasnt true. Placebo effect for chronic ms patients sounds like a total bullshit in my ears. Like i dont know what i am feeling at a given point of time or something...
Let alone the fact that restoring nornal blood flow MUST make one feel better one way or another.

Anyway, Donnchadh, thank you for everything. I am positive that your veins are a mess and stends will eventually do the trick for you. Please, keep us informed. I am in search of a neurosurgeon myself after i was diagnosed with severe bilateral jug stenosis and i really think that a balloon just wont be enough.

Keep going. And get better.
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Postby Donnchadh » Thu Apr 01, 2010 4:37 am

I am hoping to find a "cure" or at least an effective treatment for my MS. At the very least, I have experienced first hand what the beneficial effects of the liberation procedure are....and it isn't a placebo effect. It's real.

I suspect that each treated person's results are going to be different; there are so many variables (type of MS, severity, length, venous problems, etc.) that no blanket guarantee can be made in advance. But at a minimum, at least the MS would be stopped from any further progression of symptoms.

My "gut" feeling is that initially only a few medical professionals are intrigued enough by the Dr. Zamboni's theory to try it out. At some point, there will be sufficient case histories generated to move CCSVI into the point of widespread acceptance.

While it's great that treatment is now available in Poland, the harsh reality is that many MS patient's can't afford this and that the potential case load has overwhelmed their ability to treat more. A year or two waiting list is simply unacceptable....we need quicker treatment times!

Ultimately, the liberation procedure must become a commonplace treatment option here in the USA.

My position is that MSer's must become proactive...the neuro's aren't going to take the lead in CCSVI treatment, as it contradicts their "unknown autoimmune agent theory." Contact the Interventional Radiologist's in your area about CCSVI. You probably will have to try dozens before you find one, but ONE good IR is all you need.

Donnchadh
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Got MS?.....Get Liberated!
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Postby Brynn » Thu Apr 01, 2010 11:50 am

Hi Donnchadh - Well, after 5 weeks of tremendous improvements from my one stent, I too, lost all of them. Back to Poland I go at the end of April for a stent on my other side. I must say that it is hard to wait. On the one hand I miss what I had gained but on the other hand, I know what I should be able to regain. :D Good luck in your efforts to get back to what you had! It will happen! Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby Cece » Thu Apr 01, 2010 2:58 pm

costumenastional wrote: I dont believe an ms patient would ever go public saying that he /she feels better if this wasnt true.


There has always been a few people who get very excited over something that has worked for them...but there has been nothing like this in the (admittedly small) four years that I've followed forums and advancements and hope for this pill or that.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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restenosis?

Postby THEGREEKFROMTHED » Thu Apr 01, 2010 4:02 pm

I was under the impression that those that restenosed in Zamboni group didnt do so until 6 months or so? Could you maybe having some heat intolerance or relapse?? I had the procedure 4 weeks ago and really havent noticed much improvement or lessening of symptoms? Maybe i closed up too!?
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Postby patientx » Thu Apr 01, 2010 6:18 pm

dont believe there is such a think like placebo effect. I dont believe an ms patient would ever go public saying that he /she feels better if this wasnt true.

I have experienced first hand what the beneficial effects of the liberation procedure are....and it isn't a placebo effect. It's real.


The placebo effect is real. It can be a real physiological change.

Statements about the placebo effect (or lack thereof) seem to be showing up a lot lately. There is definitely a such thing as a placebo effect - this is well documented, and not just in regard to MS. But it is not imagining or thinking you are better. And it doesn't mean being dishonest about getting better.

I think this thread explains it pretty well:

http://www.thisisms.com/ftopict-10396.html
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Postby Donnchadh » Thu Apr 01, 2010 6:39 pm

patientx wrote:
dont believe there is such a think like placebo effect. I dont believe an ms patient would ever go public saying that he /she feels better if this wasnt true.

I have experienced first hand what the beneficial effects of the liberation procedure are....and it isn't a placebo effect. It's real.


The placebo effect is real. It can be a real physiological change.

Statements about the placebo effect (or lack thereof) seem to be showing up a lot lately. There is definitely a such thing as a placebo effect - this is well documented, and not just in regard to MS. But it is not imagining or thinking you are better. And it doesn't mean being dishonest about getting better.

I think this thread explains it pretty well:

http://www.thisisms.com/ftopict-10396.html


Granted that there is a placebo effect; however that doesn't mean that my improvements weren't real. Especially when claimed by someone who has never met me, let alone not qualified to make such a determination.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby Billmeik » Fri Apr 02, 2010 8:17 am

the important thing to realize is that the placebo effect has REAL results. For 100 years the testing of ms cures has been riddled by it. Studies that show 30% improvement in the control group are pretty common.

There is a chance that ccsvi is a buildup of scar tissue that is a result of having ms. If this is true then liberation means nothing and ALL liberation improvements are placebo. This doesn't mean I'm not getting the operation. Getting liberated is the kind of thing that makes sense in case its right.
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Postby Donnchadh » Fri Apr 02, 2010 8:33 am

Billmeik wrote:the important thing to realize is that the placebo effect has REAL results. For 100 years the testing of ms cures has been riddled by it. Studies that show 30% improvement in the control group are pretty common.

There is a chance that ccsvi is a buildup of scar tissue that is a result of having ms. If this is true then liberation means nothing and ALL liberation improvements are placebo. This doesn't mean I'm not getting the operation. Getting liberated is the kind of thing that makes sense in case its right.


I have not seen any evidence that CCSVI is the result of scar tissue buildup-and that doesn't begin to explain the proven existence of congenital valve malformations or "webb" blockages. No evidence has been presented so far that stenosis is the result of internal scarring.

Admittedly, research is just beginning on how exactly stenosis are formed. I personally think that some (a minority) are caused by head or neck trauma, judging from patient narratives.

I do not understand why the "placebo effect" is being pushed so hard as an explanation for the improvements experienced by many of the liberated MS patients?

Donnchadh
Last edited by Donnchadh on Fri Apr 02, 2010 8:44 am, edited 1 time in total.
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Re: restenosis?

Postby Donnchadh » Fri Apr 02, 2010 8:42 am

THEGREEKFROMTHED wrote:I was under the impression that those that restenosed in Zamboni group didnt do so until 6 months or so? Could you maybe having some heat intolerance or relapse?? I had the procedure 4 weeks ago and really havent noticed much improvement or lessening of symptoms? Maybe i closed up too!?


If you read the landmark study by Dr. Zamboni et al., there's a graph showing the re-stenosis rate over a period of 18 months. Some few had quick relapses, others took longer. Overall result is that by the end of the 18 month reporting period, about 55% had relapses. Note also that Dr. Zamboni used balloon venoplasty and not stents to open up stenosis sites.

Concerning your particular condition, there's a lot that could have happened. Best to contact your doctor or re-test to determine what's going on.

Also, I suspect that MS patients with long-term or severe symptoms have accumulated a lot of iron damage which may or may not resolve with time or other treatments.

Donnchadh
Last edited by Donnchadh on Fri Apr 02, 2010 8:47 am, edited 1 time in total.
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Postby patientx » Fri Apr 02, 2010 8:43 am

Donnchadh wrote:That doesn't mean that my improvements weren't real. Especially when claimed by someone who has never met me, let alone not qualified to make such a determination.

Donnchadh


Fair enough. It just seemed to me there was some confusion as to exactly what the placebo effect is. That's not to say your improvements aren't due to the actual procedure.

I don't anyone is pushing the placebo effect as an explanation for benefits people are seeing. But the possibility does exist.
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Postby eric593 » Fri Apr 02, 2010 8:48 am

What really concerns me:

1) I have not read any objective evidence of improvements in test results after liberation (i.e., MRI, etc.)

2) the symptom improvements seem primarily to be vague symptoms that are difficult to quantify objectively. Many many people don't seem to continue to follow up periodically with how they're doing either.

3) the high rate of re-stenosis that apparently exists

4) the lack of capable local expertise to help patients for follow up

5) the apparent hesitation of patients to report problems that arise post-liberation

6) the resistance of people to support a demand for clinical trials so we can have objective evidence of the success of the procedure

7) what I also see happening is people, when they're considering CCSVI in terms of MS and how it plays out, are being very selective. They are emphasizing the parts of their MS that FIT into the theory of CCSVI and discarding/ignoring the parts of MS and its treatments that do NOT fit into the CCSVI theory. This is natural too, that's what we do as humans is categorize. But I have really noticed it in the discussions, how people focus only on the parts of MS that fit into CCSVI to try to support the cause of MS as being CCSVI. But it's like the parts of MS that don't fit, no longer exist. So people seem to have lost their critical thinking ability and objectivity in their desire to fit MS into the CCSVI model of disease.

I have read a few accounts of people who have had what they thought were early improvements disappear and they seem very hesitant to publicize this or even to acknowledge it to themselves. This is why you can tell that placebo effect is alive and well when the patients are even hesitant and/or deeply disappointed when they realize that things haven't changed as much as they initially had hoped. It's understandable (given the costs of the procedure, the efforts to travel and GET the procedure, and what we believe is on the "line" for the success of the procedure). But it also reflects a very biased and subjective perspective going on when it's so hard for them to admit even to themselves the real state of their health when things really don't seem so "improved". Also, the defensiveness of people really undermines an observer's confidence in the "liberated's" objective assessment of their health.

We all want this to be the "real deal" for us. But we need to keep our expectations realistic and be critical in our assessment. If it doesn't turn out to be our panacea, then we'll need to face that too. We need to keep an open mind and not be swept up in our hopes and desires. We need to keep our feet well grounded, for our sanity and so we're not swept up in wishful thinking. Because "wishing" this is the "real deal" will not make it so, no matter how much we want it to be. IMHO.
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Resistance to clinical trials

Postby fiddler » Fri Apr 02, 2010 9:13 am

Eric, the only resistance I've seen to clinical trials is from some neurologists and MS Societies early on who claimed (at least for a while) that the whole CCSVI thing was a hoax. I have, however, seen LOTS of resistance from MSers to the idea that nothing should be done until a full slate of clinical trials have been done... but that is a hugely different thing.

By the way, there have been clinical trials in many medical research areas that have been discontinued for ethical reasons: the researchers doing them found such obvious good results (from the drug or procedure or whatever) that they realized it was unethical to withhold the treatment from people in the control group. Given the amount of anecdotal evidence for some improvements (which might mean, at the very least, a slowing or complete stop of the progression of MS), I can understand why many MSers might consider it unethical to withhold treatment of a known condition which may be the cause of MS.
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Postby eric593 » Fri Apr 02, 2010 9:19 am

Ted, I have seen a LOT of resistance from MSer's to doctors/neurologists who have cautioned MSer's from rushing into this until objective testing has been done.

But doctors are evidence-based animals, it's their JOB to be cautious and make sure there is some merit to treatments before they undertake invasive procedures/treatments. I don't fault them for wanting evidence beyond anecdotal.

I don't know how many times I've heard neurologists being accused of being pharma-puppets because they caution that we need some OBJECTIVE evidence that CCSVI is connected to MS before we start blowing up our veins. I WANT them to be a voice of reason. I'm not going to criticize them or blanket them all with a "pharma puppet" label for wanting evidence first before they'll recommend it.

Quite frankly, the "liberated" seem EXTREMELY resistant and defensive to ANYONE who wants to critically question what's going on before rushing into anything. But that's what debate is about, being critical in order to uncover facts and truths. It should be healthy and people shouldn't discourage skepticism and questioning.

It WOULD be "unethical to withhold treatment of a known condition which may be the cause of MS". But we don't know that yet.
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Postby LR1234 » Fri Apr 02, 2010 9:30 am

I have been "liberated" and I think there should def be clinical trials but I don't feel Phase 1 2 and 3 that take 10 years should be conducted.

Unlike drugs I believe any complications would become apparant pretty quickly soon after the procedure and 2 years would be a long enough time to monitor its efficiency and any other long term complications. After that time period it should be made available for all (if benefits are shown).
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