have most been treated?

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

have most been treated?

Postby ikulo » Mon Jan 23, 2012 10:45 pm

Im curious whether most of us here have been treated.... is that why its so quiet here?
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Re: have most been treated?

Postby civickiller » Mon Jan 23, 2012 11:07 pm

im here and i have not been treated
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Re: have most been treated?

Postby Algis » Tue Jan 24, 2012 2:54 am

Likewise ;)
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Re: have most been treated?

Postby JCB » Tue Jan 24, 2012 9:37 am

I have been treated multiple times. I still browse the site, but am not very active. I am PPMS and while I have more energy, more alert, less heat intolerance; my right side has continued to slowly progress negatively. I am not even sure that I am progessing, but I am feeling better but not getting stronger, if that makes sense. I think the more energy with lack of immediate improvement combine to add to the frustration. My left IJV has only been open 3 months, so I am still waiting.

I know I said I would be happy if the progression just stopped, but I want it all back.
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Re: have most been treated?

Postby esta » Tue Jan 24, 2012 10:18 am

I too have been treated twice, and going again in a month for my third treatment this time with Dr. Arata.

I improved extremely well the first time but it did not last long, second time I received a stent and didn't have much improvement but this time I believe will be better as he works on the valves which I believe are the key.
I too have PPMS but since my operations I have not progressed too much, and some improvements are wonderful and have stayed with me such as no more cog fog, cold purple feet are always beautifully warm, less headaches, spasms, and slurred speech.
this all could be from LDN and herbal remedies but I tend to believe I have improved the quality of my Life, however small these improvements seem to be, they are everything to me. If, this time I only stop the ringing in my ear's and the extreme pain I will be very grateful but like the other writer I want it all because I've had this glorious taste of everything disappearing.
Best to all,
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Re: have most been treated?

Postby DougL » Tue Jan 24, 2012 11:19 am

JCB wrote:I know I said I would be happy if the progression just stopped, but I want it all back.

esta wrote:I want it all because I've had this glorious taste of everything disappearing.


so great to hear such hope.
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Re: have most been treated?

Postby Cece » Tue Jan 24, 2012 12:05 pm

I've been treated twice, and it's lasted.
It's not that quiet, is it? I'd expect we've lost people to the facebook pages, or to the ebb-and-flow of people coming and leaving, and it was really different back when we could discuss the treatment but not get the treatment, back when Dr. Dake had shut down and no one else had publicly started up. I like it better nowadays: more research to support CCSVI, more people who have been treated. Can't wait until CCSVI hits big here in the US. I want everyone to know, and I want all the unknowns about CCSVI to become knowns, which will take research, which is underway.
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Re: have most been treated?

Postby Mike56 » Wed Jan 25, 2012 10:09 am

For me another interesting question would be "who has been tested", but hey, it's your post, so no, I haven't been treated.
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Re: have most been treated?

Postby David1949 » Wed Jan 25, 2012 12:49 pm

Not tested or treated yet.
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Re: have most been treated?

Postby BBE » Thu Jan 26, 2012 12:47 am

We are going to medicover pl next month. So we`ll see what happens.
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Re: have most been treated?

Postby EJC » Thu Jan 26, 2012 4:26 am

ikulo wrote:Im curious whether most of us here have been treated.... is that why its so quiet here?


I think it's quiet not becasue everyone has been treated, more to do with the initial "explosion" of CCSVI having abated a little.

We're now in that "difficult second album" stage. CCSVI has helped a lot of people, there's clearly someting to it. Even the most ardent trolls (Colin Rose excluded) have given up as the overwhelming stack of evidence was making their posts look increasingly absurd.

Where we're at now is the long slog of getting traditional medicine and the establishment to accept what it is. But before we get there, we need to know what it is, if it's symptom or if it's a cause. Why it occurs to start with etc. Why it helps some and not others, why it lasts in some and not others.

Interest has peaked, but the fight to get CCSVI accepted continues.

Meanwhile, other treatments are being researched to help those that CCSVI hasn't helped.
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Re: have most been treated?

Postby Lyon » Thu Jan 26, 2012 9:04 am

EJC wrote:We're now in that "difficult second album" stage. CCSVI has helped a lot of people, there's clearly someting to it. Even the most ardent trolls (Colin Rose excluded) have given up as the overwhelming stack of evidence was making their posts look increasingly absurd.

As one of the number of "most ardent trolls" it should be pointed out that we quit posting upon realizing that our participation was doing more to prop up an unsupported theory than those who seek to support it.

Yes it became pretty quiet in the CCSVI threads once the critics came to the conclusion that enough time has passed without anything resembling substance that CCSVI no longer seems worth discussion.

If a well run study produces something interesting down the road I'm sure I'll be allowed to become interested but attributing the noticed dead silence to the critics having given up in the face of the "overwhelming stack of evidence" is either the product of delusion or a little of that evidence needs to be produced so that the rest of us can view it.
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Re: have most been treated?

Postby EJC » Thu Jan 26, 2012 9:41 am

Lyon wrote:
EJC wrote:We're now in that "difficult second album" stage. CCSVI has helped a lot of people, there's clearly someting to it. Even the most ardent trolls (Colin Rose excluded) have given up as the overwhelming stack of evidence was making their posts look increasingly absurd.

As one of the number of "most ardent trolls" it should be pointed out that we quit posting upon realizing that our participation was doing more to prop up an unsupported theory than those who seek to support it.

Yes it became pretty quiet in the CCSVI threads once the critics came to the conclusion that enough time has passed without anything resembling substance that CCSVI no longer seems worth discussion.

If a well run study produces something interesting down the road I'm sure I'll be allowed to become interested but attributing the noticed dead silence to the critics having given up in the face of the "overwhelming stack of evidence" is either the product of delusion or a little of that evidence needs to be produced so that the rest of us can view it.


Yup, ardent troll, you said it.

Thanks Colin. Yadda Yadda.
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Re: have most been treated?

Postby cheerleader » Thu Jan 26, 2012 9:50 am

Dr. Robert Fox of the Cleveland Clinic MS center will be presenting his research into the jugular vein malformations found in autopsied MS patients at the International Society for Neurovascular Disease Conference next month. He will be joined by a multi-disciplinary panel of over 50 researchers and physicians.
http://www.isnvd.org/files/ISNVD_2012_BROCHURE.pdf

Far from being "over"--this research is really just taking off, as independent neurologists and researchers begin to look at the evidence.

I read the lull here as early adopters into treatment either having success and moving on, or having no success and looking at other treatment modalities. This is a lay persons' webpage. The real action is now at the research level, and as Bob mentioned, that takes time for results. Those of us at the beginning really thought that treatment would be much less complicated...but as the malformations are explored and IRs work on fine tuning protocols, we are learning how much more complex cerebrospinal insufficiency is. Jeff continues to do really well. He's been very fortunate.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: have most been treated?

Postby Lyon » Thu Jan 26, 2012 6:42 pm

cheerleader wrote:This is a lay persons' webpage. The real action is now at the research level,
I agree. Although it is good for us laymen to educate ourselves keep up with research and form our own opinions change or confirmation is going to come from research and researchers.

cheerleader wrote:Far from being "over"--this research is really just taking off, as independent neurologists and researchers begin to look at the evidence.
Now that's a little hard to believe because I'm not aware of any situation in all of history where research "just took off" without supporting evidence and continued to advance driven only by anecdotal evidence and great dollops of wishful thinking.

Yet that's the point the theory of CCSVI is at and that's why things are so quiet on the layman front and that's why the sellers of CCSVI are doing their best to drum up business. http://www.isnvd.org/files/ISNVD_2012_BROCHURE.pdf Notice anyone NOT drawn from the usual cast of characters? Me neither.

I'd LOVE CCSVI to be found responsible for MS or at least be a big player that can be resolved but I can't bring myself to base my expectations on my hopes.
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