Last year's word

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

Re: 9th or 10th month

Postby orion98665 » Tue Mar 22, 2011 4:51 pm

fiddler wrote: Note that people in the 11th month (an even smaller number) seem to report better results than those in the 10 month group (remember to check your graph settings and set the min number of treated people to 3, as there are only 4 people 11 months along). Also, some of those people in the 10 month out group may be people who've restenosed. In my case, I am post 10 months (the only Canadian reporting that far along) and I'm feeling fine.

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Why I do not use the L word

Postby MarkW » Sun Mar 27, 2011 11:26 am

In the UK 'liberation for MS' is used as a negative term by neuros and the media. I have avoided using the L word in my newspaper articles and suggest people supporting treatment of CCSVI syndrome do likewise. CCSVI Alliance's comments are added for info.


What is the Liberation Treatment? (and why CCSVI Alliance uses other terms)

The term “Liberation Treatment” refers to Dr. Zamboni’s use of balloon angioplasty to open or “liberate” stenoses in a group of patients who had both CCSVI and MS. Many patients who had this treatment saw noticeable improvement in their MS condition. However, nearly half of the patients who underwent the Liberation Treatment restenosed. Patients who restenosed did not show continued improvement.

Note that the term “Liberation Treatment” has been erroneously used to refer to balloon angioplasty as a “liberation” (or cure) from MS itself; in fact, the term “Liberation Treatment” should only be applied to the process of removing/opening stenoses in the veins. The term was not meant to imply that a patient was being cured of MS.

Unfortunately, not only is the term Liberation Treatment frequently misused, but the word “liberation” itself is so emotionally laden that it often polarizes discussion of CCSVI. For some seeking treatment, the term may suggest a false hope and become erroneously linked to a “cure” for MS and not merely to a method to clear stenoses. For those looking to denigrate CCSVI, the term is easily dismissed as grossly exaggerated and unscientific.

Moreover, even when used correctly, it’s not clear that “Liberation Treatment” is technically valid any longer. While Dr. Zamboni’s procedure generally used balloon angioplasty, other researchers and physicians have used stents, or a combination of angioplasty and stents, to clear or remove stenoses. Open surgery to remove abnormal valves, septums, or vein segments has also been proposed. All of these cases may exceed the procedure used by Dr. Zamboni, leaving it unclear whether the term “Liberation Procedure” is technically correct.

For all of these reasons, CCSVI Alliance uses the term “CCSVI Treatment,” or “Treatment for CCSVI” to refer more broadly to the general practice of using stents, angioplasty, surgery, or some combination of these to remove or clear the stenoses in patients with CCSVI.
Mark Walker - Oxfordshire, England. Retired Pharmacist. 16 years of study about MS.
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Venoplasty or Valvuloplasty ???

Postby MarkW » Sun Mar 27, 2011 12:03 pm

MarkW wrote:
- VENOPLASTY is the 2011 word for the procedure, not the L word.

Drsclafani wrote:
actually mark, i would argue that VALVULOPLASTY is the correct word for the vast majority of these procedures. That is what is wrong.

But its semantics. What counts is how the patient feels.

MarkW adds:
My aim is to stop the use of the L word as it gets negative press in the UK (and Canada ?). I was hoping that the Bologna conf would give definitions of the terms to use. I have not seen all the abstracts yet but missed this, if it was done.

I have declared several times before that I am a pedant. I hope that you experts will give precise terms for patients to use. My most recent expertise is presenting and selling ideas. Setting goals and definitions are key steps. That is why I was pleased by 'CCSVI syndrome' and your paper describing types of vein problems. Next I would like to know where are symptoms of CCSVI syndrome are found and then how to treat CCSVI syndrome. This is likely to benefit patients long before the causes of MS are defined, which seems to be the focus of research from many pro CCSVI groups.

Unfortunately I did not undergo primary valvuloplasty as valves were not in the forefront of treatment at that time (Jun 2010). This will need to be rectified this year despite my progress. How we patients feel is important but we patients and CCSVI doctors need to present our arguments in simple terms so politicians can understand them. The neuros have too much to loose to accept any logical argument, so we have to by-pass them.

My more provoking thoughts need to be taken off forum as naysayers are watching.

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Postby Cece » Sun Mar 27, 2011 2:43 pm

The media loves the word "liberation." It was coined in passing by one of the Italian researchers, a very shiny dazzling coining, in reference to the liberation or freeing of the blood flow. I don't see the Canadian media giving it up. Hasn't Dr. Zamboni already said he does not care for the term, as invariably the reports incorrectly say it was him who named it?
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Re: daily updates

Postby CureIous » Sun Mar 27, 2011 8:39 pm

zinamaria wrote:This site is for pwMS, not neuros. Personally, I enjoy hearing of any improvement, daily or otherwise. We are not just science experiments we are people struggling with this awful disease. So, I feel it it helps someone to come on a thread to share the ups and downs, post Venoplasty, then we ought not to put rules around that process. Let the scientists do that when they start collecting data.

Yes, for pwms. Some of the stuff that is incorrectly categorized as "squabbling and male dominated bickering", labeling and the like (oddly enough, an inflammatory, sexist label itself), is current patients not tolerating being categorized as zealots for the unpardonable sin of actually enjoying their newfound improvements to QOL without being able to then, by rigid, deterministic scientific method, prove that it is not all in their heads, or otherwise, and forever, be themselves cast into the vast lake of anectdotal evidence, never to be heard from again.

Or, we can become skeptics who don't bother to read scientific papers, while insisting that papers aren't "proof" anyways, but at the same time wanting double blinded placebo controlled studies, which are sure to show a 75-80% correlation, if not higher, which will then, finally, prove (oops) NOTHING, as some nuance in the methodology will "cast doubt" over the findings, and we can all keep it going ad nauseum, as the true results won't be known for many years, should the MS complex truly be abated for that time, and then how will we know it wasn't the DMD's anyways, so on so forth.

That's the future of the so-called argument. Thing is, it's going to be difficult to get anyone to "get back to basics" and just discuss research, when they can't even discuss their own personal experiences (refer back to the pwms part at the start of this), without being cast onto "one side or the other".

Labels allow dismissiveness. The so-called skeptics in this forum, to me, are anything but. So the label just doesn't stick. Skeptics usually come armed with conflicting datasets, not an agnostic "you can't prove to me God exists" attitude. (God meaning CCSVI of course).

Some of us WANT the truth, the whole truth, there is no concerted effort to silence those who've had less than stellar experiences with this treatment modality, that's a red herring, there's an entire sticky devoted to such, and many many MANY posts from those who have had just that, less than stellar results. Those reports don't bother me, personally, in the least, as far as whether CCSVI is, or isn't an important part of what we call MS. They do bother me though insofar as I hate to see anyone suffer needlessly, be it by undertreatment, overtreatment, no treatment, or, in some cases, by the dang thing just not doing anything.

I want it all, unfortunately, because this has become such a personality driven movement, we've replaced the What, with Who.
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Consider evidence, please

Postby MarkW » Tue Mar 29, 2011 3:44 am

The naysayers are not willing to read published papers and want 'proof' of CCSVI was noted by CureIous, I agree. I add that in medical science there is no proof, only evidence (recent jargon is evidence based medicine).

I have evidence (venogams) that I had 4 restricted veins.
I was prepared to publish evidence that balloon venoplasty had a impact on my MS over a six month period (personal evidence, my wife's evidence, my oesteopath's evidence). No neuro has told me this was in my mind or placebo.

I have an issue with:
It has a title of:
Tracking site for CCSVI liberated MS patients
I have seen no evidence that anyone with MS (multiple lesions) has been liberated (freed) of their lesions. Please change the site to read:
Tracking site for MS patients treated for CCSVI syndrome.
The site becomes powerful patient evidence and very useful.

The 'L' is used by media because CCSVI advocates in UK and Canada use it, Cece. If CCSVI advocates never use the terms liberation or cure then the media will eventually stop to. Briefing documents prepared for the media by CCSVI advocates would benefit from the words used by CCSVI Alliance. My Daily Telegraph interview (July 2010) did not use the 'L' word but the BBC South West used it. Which gave more positive picture of CCSVI syndrome for UK politicians ?

The argument with neuros and naysayers is going to be a long one. ThisIsMS is a chat room for pwMS but outside this arena please consider what you say about CCSVI syndrome, especially to the media, neuros and MS organisations.

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