spreading the ccsvi word

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

Postby whyRwehere » Thu Oct 22, 2009 11:01 am

I prefer non "MS experts", because they don't assume that they know it all.
Good try, though!
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Postby bestadmom » Thu Oct 22, 2009 6:00 pm

This thread has taken some zig zags and we wanted to circle back to plotting organized efforts to reach neurovascular interventional radiologists at university hospitals. Our CCSVI North East group of 4 of us have contaced 95+ doctors thru emails, and we have all bult the list together, written our own letters, and email them independently. We've gotten some great responses - mostly doctors not hearing of it and them reaching out to their collegues, and in one case, a call to Dr. Dake.

The only way we are going to get the word out is by a concerted effort. We've got NY metro area, CT, NJ and Massachustetts covered, and one guy at Upenn in Philadelphia. It makess sense for you all to try to organize geographically and do the same thing. We are willing to share our emails, and one of our members had surgery with Dr. Dake and is willing to share her results.

We are willing to continue to branch out to additional states, but it makes the most sense for all of you to contact doctors who are close to home. At least it gives us the opportunity of getting someone who accepts our insurance to buy into the paradigm.

Feel free to pm me for more info.

Michelle
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Postby MrSuccess » Thu Oct 22, 2009 9:39 pm

Sharon , your posts are always informative. That report on Dr. Vollmer may be a bit strongly worded. Seems to me that having Dr. Vollmer onside with the CCSVI program would be beneficial to MS patients .

This will take time.

Going online and portraying someone as .....close minded ...or worse ..will not help get CCSVI traction.

It is imperative that an accurate account of doctor-patient dialogue is reported here. It's hard ...but emotions should be held in check.

Not to dispute your story , but only recently - October 11th 2009 - on the NMSS thread , you labeled the NMSS as dismissive. I called you on this and to your credit ....you changed your opinion...and reluctantly agreed that the NMSS was not dismissive re CCSVI.

Other medical experts read these posts. Let's not frighten them off by posting one sided 'he said - she said' posts. That is not right.

As with the NMSS , it would be nice to hear Dr. Vollmer's opinion - in his own words - on such an important matter .

Just giving this some balance ................




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Postby Sharon » Fri Oct 23, 2009 6:59 am

Mr.Success wrote:
Going online and portraying someone as .....close minded ...or worse ..will not help get CCSVI traction

I never said he was close minded....or worse...

Remember, this was a public forum where the question was asked - I along with 30 or so other people heard his answer.

I'll get back to you later -- need to get to exercise class.
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Postby Sharon » Fri Oct 23, 2009 11:16 am

Mr.Success -

First, there needs to be some clarification: you wrote
Not to dispute your story , but only recently - October 11th 2009 - on the NMSS thread , you labeled the NMSS as dismissive. I called you on this and to your credit ....you changed your opinion...and reluctantly agreed that the NMSS was not dismissive re CCSVI.

Please reread the thread on the NMSS
http://www.thisisms.com/ftopic-8361-day ... sc-30.html
On October 11, 2009 Mr.Success wrote:

At the present time ,we have not been approached for funding any projects related to CCSVI. If we receive a proposal related to CCSVI that is found to be outstanding and relevant to MS , we would likely commit to fund such a study.

Does that sound dismissive ?


My answer was:

No, it does not sound dismissive -

I said Quote:
What is not stated is the NMSS is in financial distress - they may have an interest but they have no money.



I do not doubt the NMSS wants to fund new MS research - they have in the past, they are currently, and they will do so in the future. My understanding is that at this point in time, due to the economy, the NMSS like other organizations, is not as financially strong as it used to be.
Plain and simple. ------


Today you wrote:
Not to dispute your story , but only recently - October 11th 2009 - on the NMSS thread , you labeled the NMSS as dismissive. I called you on this and to your credit ....you changed your opinion...and reluctantly agreed that the NMSS was not dismissive re CCSVI.

You were the one bringing in the wording "dismissive" - you asked if I thought the report was dismissive and I said "no". Sorry, but you did not call me on anything. And, by the way if you care to check the financial status of NMSS, you can find all their financial information online - it is public information.

Now, back to University Hospital:
You wrote:
Going online and portraying someone as .....close minded ...or worse ..will not help get CCSVI traction.

I have reread my post over and over again -- I did not say Vollmer was closed minded.
I wrote
Vollmer was unable to answer my question in the public forum

His first word to my question was "no" and then he started talking about some other experience with a totally unrelated study (which by the way had to do with some other disease than MS).

I wrote this about my private conversation:
I approached him privately after the meeting. He questioned the Buffalo study ---his good friend Bianca Guttman had not discussed it with him. When I told him it was a 1600 person study and D. Guttman was a major player in the study -- the tap dance started again. I told him that I was glad to have brought the whole study of CCSVI and how important it was, to his attention again -- and hoped that the university would reconsider with a follow-up.

You wrote
Other medical experts read these posts. Let's not frighten them off by posting one sided 'he said - she said' posts. That is not right.


I do not believe this was a one sided post - you are correct though - Vollmer and I are the only ones that know what was said. It was a very respectful exchange of ideas and I reported as such. It would be interesting to know how he would recollect the conversation. And, as far as scarying medical experts away from reading the posts about CCSVI - you have got to be kidding me.
You wrote
As with the NMSS , it would be nice to hear Dr. Vollmer's opinion - in his own words - on such an important matter .
It's too bad you were not present at the meeting - about thirty other people heard his opinion.

Sorry to the other TIMS members for such a long post - I just needed to clarify a few things with Mr.Success. BTW who are you Mr.Success? Do you have MS? Do you have a spouse or a sibling with MS? Are you one of the medical experts who might get frightened and quit reading the posts on CCSVI?

Sharon
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Postby Rokkit » Fri Oct 23, 2009 3:03 pm

When I see a post by MrSuccess, I just move on to the next post. No need to read. What happened to the good ole days of the usenet killfile?
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Postby ErikaSlovakia » Sat Oct 24, 2009 12:12 am

Rokkit wrote:When I see a post by MrSuccess, I just move on to the next post. No need to read. What happened to the good ole days of the usenet killfile?

I do the same. No need to read.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby MrSuccess » Sat Oct 24, 2009 12:21 am

Sharon ... I commend your efforts in expanding CCSVI information to other health professionals. I am impressed with the fact that you left your warm home and travelled out into the cold snowy night ,to bring the CCSVI information to others in need. That is impressive.

I know you have stepped up , and placed yourself in possible jeopardy by having surgery in uncharted waters. I admire your courage. Well done.

And now you want to help others access this remarkable new idea,CCSVI.

From what has been posted ...it is not going to be an easy task.

We had a difference of opinion on what the NMSS currently thinks about CCSVI. I stand by my remarks. You also share quite a different perspective on NMSS finances , than I. I have read the NMSS annual reports , but Cheerleader better explains it in another post. It's all good.

As of October 6th , the NMSS has not been approached by any CCSVI investigators . As he has written , Ashton Emery - a well known and respected MS author ... had no knowledge of CCSVI until recently.

This meeting you attended ...it sounds like CCSVI was new to other people in attendance. Any chance Dr. V has little or no CCSVI information in his possession ? After all ....he does have his own research to occupy his thoughts . And I might point out ...research to help MS people.

In case you missed it , I will repeat myself. The CCSVI idea and treatment will only advance when one health professional talks nose-to-nose to another. Doctor to Doctor. Other than our famous Cheerleader, all other non-MD opinions are taken lightly , by those we wish to enlighten.

I read every post on TIMS . I am so impressed with the grassroots effort being put forth , including yours Sharon. You have contributed much.

I'd like to close this post with my opinion on NMSS , neuro's , and other MS medical experts. They are each and every one doing their best to solve the MS riddle.


Have a good weekend :wink:



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Postby Frank » Sat Oct 24, 2009 5:09 am

I just saw that machineslikeus.com has an article about CCSVI in MS, people are taking notice :)...

http://machineslikeus.com/news/neurolog ... g-cause-ms

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Loobie » Sat Oct 24, 2009 5:34 am

Mr. Success,

You have been asked repeatedly what your connection to MS actually is and you have never answered. I'm curious as to why you evade that question everytime it's asked of you. I know I called you a dick in another thread, but you were being one to Erika. Inquiring minds want to know. What's your deal?
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Postby Ernst » Sat Oct 24, 2009 5:40 am

Im sorry too Mr. Succass, but your previous posts bring confusion and negativity - just, behave man. :) Also got angry about your statements to Erika.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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other forums-

Postby jay123 » Sat Oct 24, 2009 6:05 am

The braintalk forum which used to be a great forum and is making a comeback has a decent thread going on CCSVI. Perhaps some of our more knowledgeable people and some of our 'stenters' could take a look and maybe contribute. It would help spread the word---
http://brain.hastypastry.net/forums/sho ... hp?t=69971
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Postby ozarkcanoer » Sat Oct 24, 2009 7:36 am

I'm getting the word out in St. Louis !!!!!

I just wanted to tell you all that I contacted a brain scientist at Washington University Medical School in St. Louis just two days ago. In fact I started a thread here about this. He emailed me back right away and I am just waiting for more information from him. He wanted to look into CCSVI so he could respond to me. I told him I wanted to participate in Dr. Haacke's imaging study and wanted his opinion of CCSVI. So right now I am on pins and needles just waiting for an email from him. I will be meeting with him sometime soon to discuss CCSVI with him face-to-face.

For more info just look for the previous thread I started on Thursday Oct 22.
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Postby bestadmom » Sat Oct 24, 2009 7:49 am

Mr. Success mentioned that what will get the word out is doctors talking to eachother. I agree and this is why we must let them know about CCSVI.

Our North East US group's grass roots effort has sent emails and letters to close to 100 interventional neuroradiologists at university hospitals in NY, NJ, CT and MA. We've heard back from several and it is creating chatter. Some have met with their interdisciplinary teams and are considering what to do next, and some have picked up their phones to consult with Dr.Dake and Dr. Haacke and the folks up at SUNY Buffalo. Our offer to be their guinea pigs and to recruit others for them is helping too.

The doctors currently involved in CCSVI are very well known and respected in their fields - published and accomplished. The doctors who have expressed interest are from the same ilk. These doctors are the leaders in their fields, not followers, and we need them to know what is going on.
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Postby mrhodes40 » Sat Oct 24, 2009 8:20 am

Bestadmom, right on!

That is some seriously great grass roots effort. :D :D :D

A long time ago I read a paper that suggested that it takes about 30% of the group to go for a new idea before it reaches a tipping point and it can catch on....

As this goes forward and notably with the Canadian documentary there will be progressively more buzz and interest. The initial post on the big thread was December 16 if I remember right: 10 months. WOW~! 8O :D :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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