"The Emperor's New Clothes"

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

Postby bluesky63 » Thu Sep 16, 2010 11:35 am

Well, it's always excellent to try analogies, but of course, (most) people with MS are not pompous, vain, and "just hopelessly stupid." At least not the ones I know. And we certainly are not emperors! If we were we could be in positions of power affecting policy! Wouldn't that be great. :-)

Ans of course, an analogy like this is pretty much directly saying that the doctors involved with CCSVI are swindlers. That's directly calling Dr. Sclafani, Dr. Dake, Dr. Zamboni, Dr. Haacke, Dr. Zivadinov, and countless others SWINDLERS.

And by the way . . . I also don't agree with characterizing us as all "desperate for a cure," because the implication is that we are unable to correctly, objectively evaluate treatments, meds, procedures, and so on, and we need the calmer, more rational minds of those in charge to take care of all of us and tell us what's good for us.

In fact, the majority of us are better informed than our physicians, we are so used to endlessly waiting for everything that we have learned the art of patience when it matters, and most of us are quite capable of evaluating our options for treatment. The "desperate" comment that gets bandied around is an attempt to minimize our abilities. Don't permit it!

I am going to speak only to my personal experience, but I was told by a highly respected physician -- the director of his specialty at one of the top medical centers in the country -- that I had severe blockages in my circulatory system that might or might not be related to symptoms I was experiencing, but that should be addressed because crucial areas of my central nervous system suffered from a lack of blood flow. I could see the evidence objectively. I wasn't being strong-armed into anything. The choice was always mine, with plenty of discussion about the unknowns. We knew we were trying something exciting that could really change the way we approach these symptoms, but we didn't want to set expectations too high.

And incidentally, angioplasty for blood vessel blockages is a recognized medical treatment, no matter what your condition is. It's not like "weavers" creating a brand new "cloak" or procedure. A more apt analogy would be the chef borrowing the plumber's plunger because he realizes his kitchen sink is clogged and it's a tool that might help in the kitchen as well as the bathroom, and it works better than pouring a dose of corrosive Drano down the pipes every week.

Anyway, I saw a direct correlation between some symptoms and the angioplasty. It was not a "miracle cure." But it provided symptom relief far superior to any other intervention in my ten years of aggressive MS, and was far safer than the toxic options offered before, none of which were well proven.

I am not the emperor.

My doctors -- all of whom are smart, current, and in agreement about doing this -- are not weavers and swindlers.

Honestly, all of us are in the middle of learning about an interesting phenomenon, which we can do without insulting each other or the passionate, dedicated physicians who are dedicating their careers to this, like Dr. Sclafani, without profiting.

Each person needs to come to an independent decision, and each person needs to feel comfortable with that decision. I'm glad you can get stuff off your chest, but I believe we can examine questions, welcome debate, and support each other.

(Sorry -- too long -- but I don't have time for brevity, if you know what I mean! :-) )
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Postby HappyPoet » Thu Sep 16, 2010 11:43 am

BRAVO!
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Postby magoo » Thu Sep 16, 2010 11:54 am

Well said Bluesky. Thanks for having our back.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby PCakes » Thu Sep 16, 2010 12:30 pm

BooBear, Bluesky..

The role of a writer is not to say what we all can say, but what we are unable to say. ~Anaïs Nin


congratulations..
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Postby Trish317 » Fri Sep 17, 2010 8:51 am

bluesky63 wrote:Well, it's always excellent to try analogies, but of course, (most) people with MS are not pompous, vain, and "just hopelessly stupid." At least not the ones I know. And we certainly are not emperors! If we were we could be in positions of power affecting policy! Wouldn't that be great. :-)

Ans of course, an analogy like this is pretty much directly saying that the doctors involved with CCSVI are swindlers. That's directly calling Dr. Sclafani, Dr. Dake, Dr. Zamboni, Dr. Haacke, Dr. Zivadinov, and countless others SWINDLERS.

And by the way . . . I also don't agree with characterizing us as all "desperate for a cure," because the implication is that we are unable to correctly, objectively evaluate treatments, meds, procedures, and so on, and we need the calmer, more rational minds of those in charge to take care of all of us and tell us what's good for us.

In fact, the majority of us are better informed than our physicians, we are so used to endlessly waiting for everything that we have learned the art of patience when it matters, and most of us are quite capable of evaluating our options for treatment. The "desperate" comment that gets bandied around is an attempt to minimize our abilities. Don't permit it!

I am going to speak only to my personal experience, but I was told by a highly respected physician -- the director of his specialty at one of the top medical centers in the country -- that I had severe blockages in my circulatory system that might or might not be related to symptoms I was experiencing, but that should be addressed because crucial areas of my central nervous system suffered from a lack of blood flow. I could see the evidence objectively. I wasn't being strong-armed into anything. The choice was always mine, with plenty of discussion about the unknowns. We knew we were trying something exciting that could really change the way we approach these symptoms, but we didn't want to set expectations too high.

And incidentally, angioplasty for blood vessel blockages is a recognized medical treatment, no matter what your condition is. It's not like "weavers" creating a brand new "cloak" or procedure. A more apt analogy would be the chef borrowing the plumber's plunger because he realizes his kitchen sink is clogged and it's a tool that might help in the kitchen as well as the bathroom, and it works better than pouring a dose of corrosive Drano down the pipes every week.

Anyway, I saw a direct correlation between some symptoms and the angioplasty. It was not a "miracle cure." But it provided symptom relief far superior to any other intervention in my ten years of aggressive MS, and was far safer than the toxic options offered before, none of which were well proven.

I am not the emperor.

My doctors -- all of whom are smart, current, and in agreement about doing this -- are not weavers and swindlers.

Honestly, all of us are in the middle of learning about an interesting phenomenon, which we can do without insulting each other or the passionate, dedicated physicians who are dedicating their careers to this, like Dr. Sclafani, without profiting.

Each person needs to come to an independent decision, and each person needs to feel comfortable with that decision. I'm glad you can get stuff off your chest, but I believe we can examine questions, welcome debate, and support each other.

(Sorry -- too long -- but I don't have time for brevity, if you know what I mean! :-) )


*Standing ovation....with the greatest admiration and respect....*
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Postby fogdweller » Fri Sep 17, 2010 9:41 am

bluesky63 wrote:And by the way . . . I also don't agree with characterizing us as all "desperate for a cure," because the implication is that we are unable to correctly, objectively evaluate treatments, meds, procedures, and so on, and we need the calmer, more rational minds of those in charge to take care of all of us and tell us what's good for us.


Sorry. Didn't mean to imply those negative things, just that we are extremely desirous of a cure or treatment, and a bit impatient. Yopu can't deny that we are a vulnerable population in that regard, at least as far as the scientific/medical community is concernered.

I, for example, have had PPMS for 35 years and am 58. A drug that promises some relief for RRMS patients in 10 years is not too interesting to me. And I can certainly understand that patients that have just been diagnosed and don't want to spend the rest of their lives getting worse with no hope for improvment are very anxious for something as promising as Zamboni's theory to prove to be correct.

By the way, I agree with the positive things you said about the patients with MS, at least on this forum. Amazingly well informed, scientifically skeptical in the good sense of that word, verly able at understanding and analyzing various inputs from all different sources. It is very impressive.

I also agree that angioplasty is a relatively safe procedure. I have my concerns about stents as currently designed being used in major veins that feed directly into the heart, but angiplasty is safe.
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BooBear revived!

Postby Kate_PghPA » Wed Sep 22, 2010 7:18 am

Cece wrote:
BooBear wrote:If that means I am walking down the street naked in front of throngs of people (ala the Emperor), well, at least I am WALKING DOWN THE STREET. Balanced. Strong.

Well said!!!


So happy to hear BooBear is doing well...and yes, I agree:

MS as an auto immune disease IS just a theory...

CCSVI 's Angioplasty Treatment is still a theory-- how being researched-- but it's one I'm overly willing to count on!!

Hoping to be "liberated" locally in October '10 -- I'll gladly be an Informed Guinea Pig for my local university :)
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Postby TMrox » Wed Sep 22, 2010 8:49 am

Thanks Bluesky, that was brilliant :D


Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby MegansMom » Thu Sep 23, 2010 10:30 am

Malden,

Its very funny that I dove right into your thread, read your opening post and thought you were referencing BIG Pharma and the Neurology community.

You can be as skeptical as you would like about CCSVI. But if you research Dr Fabrizio Salvi ( the skeptical neurologist) that Zamboni approached in is early research.. You will see that Salvi needed proof and Salvi sent Zamboni 18 patients during an acute MS "event". Instead of a round of high dose steroids,they were angioplastied instead, and ALL 18 had resolution of their neuro symptoms immediately.
h
Now if they were like most new MS patients they know next to nothing in the beginning.They might not even know what steroids are or do, They certainly would not be a group of desperate patients, ripe for placebo.

How do you explain the abrupt cessation of the "event". Not even steroids do that?

Emperors new clothes ?.............hmmm seems like they are tailored made by big Pharma.

I think I would like mine designed by an Italian named Zamboni
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby vivavie » Thu Sep 23, 2010 10:56 am

MegansMom wrote:
I think I would like mine designed by an Italian named Zamboni


One of those precious moment, I admire your wit. You put a smile on my face for the rest of the day :D
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Postby Cece » Thu Sep 23, 2010 12:24 pm

MegansMom wrote:Now if they were like most new MS patients they know next to nothing in the beginning.They might not even know what steroids are or do, They certainly would not be a group of desperate patients, ripe for placebo.

Emotions run really high when newly diagnosed. A newly diagnosed MSer might be more likely to fall for a placebo effect than the jaded older types.

It appears to me that people are getting greater responses to CCSVI treatment than can be accounted for by placebo effect, but there needs to be more studies done to capture this. Zamboni's endovascular treatment study has not been replicated and there is also a worry that docs are rushing in to do randomized controlled trials before they themselves have master the techniques.
I think I would like mine designed by an Italian named Zamboni

Oh, nice one!

I'll pair mine with a great set of high heels! :)
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Postby coach » Thu Sep 23, 2010 12:54 pm

MM I thought the IR moto was great Opening Minds, Opening Veins :lol:
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