[someone]

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

[someone]

Postby Cece » Sun Mar 13, 2011 7:50 pm

[someone], please stop sending me pm's. I am feeling harassed.

[someone] would like everyone to be aware that I am not a doctor nor do I have medical training. My knowledge of CCSVI comes from over a year of daily reading and studying of this subject. I consider Dr. Sclafani an excellent teacher and mentor. I make reasonably good use of google scholar. I look for patterns in the anecdotal reports, of which we have many. I am a patient and a CCSVI enthusiast.

[someone] believes I was terribly wrong in my information in a disagreement with a fellow patient today. I do not know if that is true. There is the possibility that scarring could happen directly from the ballooning without a clotting component of the microtears. It goes against what I previously knew, but there is always more to be learned.

What I do know is that we have heard the reports of three patients here who have had hypercoaguability disorders: M., B., and D. Of these three patients, two of the three patients ended up worse off than they had started. The third has done well, as far as I know; this would be M.

If a patient shows up on TIMS and says, I have a hypercoaguability disorder and I am about to get my first procedure, I would worry that this patient too would end up worse than she started. Going by the three patients with hypercoaguability, 66% ended up worse off. Those are terrible odds.

If we do not learn from what has happened, we will repeat the same mistakes. The doctors are the ones who need to be learning, but there are so many doctors, at different points on the learning curves, and new doctors coming onboard every day it seems. As patients, we are relying on each other's knowlege and on each other's experiences. I am grateful to everyone who has posted here, good or bad, of their outcomes.
Last edited by Cece on Sun Mar 13, 2011 9:42 pm, edited 1 time in total.
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Postby soapdiva884 » Sun Mar 13, 2011 8:55 pm

Cece, your really not a Dr.??? LOL...........just let things like that roll off your shoulders. If you feel harassed enough, let a mod know and they hopefully will take care of it. You are one of the most knowledgable people on this forum and I believe Dr. Sclafani would agree with me. You ROCK in my opinion. You have been an inspiration to alot of people and don't you forget that!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Lyon » Sun Mar 13, 2011 9:12 pm

Rosegirl has a point. CCSVI isn't even proven.

It's bad enough that Dr's speculate about what should or shouldn't be done regarding something that might not even exist to say nothing of a layperson. In Karate lessons my instructor pointed out that the most dangerous person is someone who knows just enough to get themselves (and others) in trouble. That's Cece.

I don't know if Rosegirl addressed it in her PM's to Cece but one of the most concerning points was the obvious distress Cece was showing through that thread regarding her need to "protect the reputation" of CCSVI to the exclusion of all else.

Although objectivity is obviously optional here at thisisms Cece's actions in this thread seemed to me just over the border of willing disregard for the well being of others for the sake of CCSVI.
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Postby MrSuccess » Sun Mar 13, 2011 9:14 pm

don't take the bait .




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Postby garyak » Sun Mar 13, 2011 9:22 pm

CECE is an educated angel and I take offense to the karate analogy , just lol.
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Postby CD » Sun Mar 13, 2011 9:24 pm

I posted on the wrong thread. 8O
Last edited by CD on Sun Mar 13, 2011 10:18 pm, edited 1 time in total.
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Postby Kathryn333 » Sun Mar 13, 2011 9:40 pm

soapdiva884 wrote:Cece, your really not a Dr.??? LOL...........just let things like that roll off your shoulders. If you feel harassed enough, let a mod know and they hopefully will take care of it. You are one of the most knowledgable people on this forum and I believe Dr. Sclafani would agree with me. You ROCK in my opinion. You have been an inspiration to alot of people and don't you forget that!


Well said, soapdiva. I can't find the thread to read it, but I agree Cece is one of the most knowledgable people on this forum. She does her research, she cares about people on this forum, she's encouraging, and she's always willing to share her knowledge. We're all lucky to have her contribution.
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Postby Cece » Sun Mar 13, 2011 9:41 pm

I will edit out the name, I was reacting. She said I should be glad that she wasn't making this public, so I thought, ok, let's have it be public. She may have had good intentions.

The other thread is right here:
www.thisisms.com/ftopict-15865.html
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Postby CenterOfGravity » Sun Mar 13, 2011 10:28 pm

Cece, not once have you ever portrayed yourself as a doctor. You've always portrayed yourself as a person who has worked hard to understand the science, and to learn from someone like Dr. Sclafani. If people aren't capable of gleaning that, I don't see how their comprehension is your issue. I know I always enjoy your posts.
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Postby PCakes » Sun Mar 13, 2011 11:19 pm

CenterOfGravity wrote:Cece, not once have you ever portrayed yourself as a doctor. You've always portrayed yourself as a person who has worked hard to understand the science, and to learn from someone like Dr. Sclafani. If people aren't capable of gleaning that, I don't see how their comprehension is your issue. I know I always enjoy your posts.

ditto.. !!
Lyon wrote:In Karate lessons my instructor pointed out that the most dangerous person is someone who knows just enough to get themselves (and others) in trouble. That's Cece.

...this is rude and the rest is ridiculous. We are all adults with the ability to read, research and reason.
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Postby brave » Mon Mar 14, 2011 12:23 am

I personally believe Cece is knowledgeable and spend good amount of time researching . She is very care and tries to share her knowledge with other MSers BUT is every individual's responsibility to judge for yourself.
If you disagree with her opinion just don't buy her opinion and move on , let others benefit if they want to.

This applies to every social networking , read it, like it, enjoy it OR read it, dislike it, ignore it, move on

I appreciate Cece's responds.
Good job Cece , GO Cece
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Postby Algis » Mon Mar 14, 2011 12:26 am

Just disregard critics. Further understanding of this disease; with or without CCSVI will be made throughout discussions/assumptions/brain storming/beliefs/dis-beliefs/name it/...

I admire your tenacity and courage. And when the computer is off; it is just up to me to decide what is best...

Go Cece :wink:

Les chiens aboient... La caravane passe 8)
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The Issue is How to Treat CCSVI

Postby Squeakycat » Mon Mar 14, 2011 5:40 am

Lyon wrote:
Rosegirl has a point. CCSVI isn't even proven.


Ironically, the whole point of the discussion at issue here is that when the veins are opened, symptoms attributed to MS abate and when they restenose, those same symptoms return. That seems like gold standard proof to me. The issue is not whether CCSVI is proven. The issue is how to treat it to minimize adverse effects and maximize the benefits.

It is pure nonsense to think that medicine only accept as proof large scale, placebo-controlled, blinded clinical trials which seems to be Lyon's repeated point.

The session on CCSVI at the upcoming SIR meeting gets right to the heart of this issue:

CCSVI is a hemodynamic manifestation of outflow obstruction or resistance manifested by memory loss, mental confusion, fatigue, headaches, ataxia, weakness and sensory deficits. The cause of CCSVI appears to be venous outflow obstructions due primarily to truncular malformations of the jugular and azygos.


In other words, who cares about MS? Let's figure out how to treat CCSVI.
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I support CCSVI

Postby Rosegirl » Mon Mar 14, 2011 5:59 am

I strongly believe in research and treatment of CCSVI. I was part of a group of patients who got venograms but were undertreated. I am currently looking for another venogram.

I prefer to wait until after the SIR meeting publishes guidelines that have been created by the collaboration of doctors around the world. I also support anyone who did not have the luxury of waiting and, like me, thereby helped create that data base.
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Re: The Issue is How to Treat CCSVI

Postby Lyon » Mon Mar 14, 2011 6:00 am

Squeakycat wrote: Ironically, the whole point of the discussion at issue here is that when the veins are opened, symptoms attributed to MS abate and when they restenose, those same symptoms return. That seems like gold standard proof to me.
As you know, CCSVI stands for Chronic cerebrospinal venous insufficiency but what is essential is that we wouldn't be interested in that if it weren't for the assumption that there is indeed an "insufficiency" capable of causing negative symptoms.

While there are venous obstructions being found in people with and without MS, it remains to be proven that there is by definition "insufficiency" and that the insufficiency (if existant) is capable of causing negative symptoms.

As for this "gold standard proof", should science really accep as "fact"t the opinions of a few people NOT under controlled conditions? Sure, if we want to call it something other than science.

I'll stick with my previous statement that it all remains to be proven.
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