My Advocacy Plan

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

Postby TMrox » Wed Jun 30, 2010 11:30 am

rssugg, great letter. It is very moving.

I just have one suggestion. Since there is so much ignorance about CCSVI, why do not you suggest some research articles they can read about CCSVI. You can for instance add the link to
http://www.fondazionehilarescere.org/eng/index.html

there docs will be able to find quite a few articles about CCSVI.

As a suggestion, if you do not think necesary don't do it, but probably you can mention some of the studies confirming the correlation between CCSVI and MS:

% MS patients with CCSVI (chronic cerebro-spinal venous insufficiency)

Zamboni 90% ( i've seen other websitest quoting that is 100%, i'm not sure about it) (University of Ferrara, Italy)

Zivadinov 55% -62% (University of Buffalo, USA, this study did not use Zamboni's doppler).

Mamoon 84% (Jordan University of Science and Technology, Jordan)

*Simka 97% (Department of Angiology, Pszczyna, Poland)

Kuwait 96% (Mubarak Al-Kabeir Hospital, Kuwait)

Roel Beelen 91% (OLV Hospital, Belgium)

*Simka is the one who has tested the most MS patients for CCSVI. Over 400.

Here Dr. Brandes explains why the English and German studies did not use the Doppler correctly to diagnose CCSVI

http://healthblog.ctv.ca/post/When-stud ... mples.aspx
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Postby rssugg » Wed Jun 30, 2010 11:37 am

That is great information! I have used many of the research and statiistics above in my mailings to doctors, but i didnt want to overwhelm staff and board members at the state NMSS chapters.
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Postby BadCopy » Fri Jul 02, 2010 3:40 pm

I am looking for a straight forward to the point letter that I can send to IRs, Vascular surgeeons etc. I am not sending to neuros. I am trying to eliminate the middleman. I want it to be 1 page or less, get to the point, show some stats but dont overwhelm.

I am going to start by sending out about 100. I live in MN and want to blanket IRs at Mayo Clinic to start. If anyone wants to share a good letter please send it to me via PM. I am set for the procedure in August with Siskin, but this is something everyone should have a chance to have done if they so choose.
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Postby MarkW » Sat Jul 03, 2010 2:01 am

Hello TMrox.
Quoting percentages can be misleading unless you quote the sample size (number of patients and method used). Also remember the only definite diagnosis of stenosis is Selective Venography. Doppler is best described as a good non invasive indicator.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby TMrox » Sat Jul 03, 2010 4:20 am

Hi MarkW

I totally agree with you. The more info we can provide to docs that are still unfamiliar with CCSVI the better. Simka is the one who to my knowledge has tested the most patients, over 400. That is important to mention in letters if you are going to contact docs.

It is also important to mention which methods each docs have used to test CCSVI, and why some studies (German, English) might have misdiagnosed CCSVI. Also why the buffalo study results are so far off from other studies.

It will be great if someone can come with a brief and informative letter for docs with a few telling stats that don't overwhelm them but that trigger their medical curiosity to go and read the journal articles for themselves.

I think that the letter that rssugg wrote is brilliant and if I were a doc I will certainly read it with attention.
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Postby TMrox » Fri Jul 09, 2010 2:26 pm

Here is a website with sample letters one could send to local doctors about CCSVI:

http://ccsviworldwidevictory.com/TemplateLetters.aspx
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Postby MS_HOPE » Sun Jul 18, 2010 11:59 am

Just found this topic - I applaud your activism, rssugg!! And I'm especially interested in the few responses you've gotten, since I also live in NC. Can you post the names or PM me? Thank you! (Also, may I post on the NC CCSVI Facebook page news of your outreach?)

I had some success in reaching out to a local research/teaching hospital’s chief of vascular surgery with the email below (slightly amended). I found her name and email on the hospital’s website, and addressed it personally. I received an immediate response, and learned that a vascular surgeon in the department, Eric Mowatt-Larssen (to whom Magoo referred on page 1) is working on an IRB proposal for a CCSVI study, but approval is probably many, many months away. (BTW, he's signed up to attend Dr. Sclafani's July 26th CCSVI symposium!) For those who can afford to wait, and who qualify for the study, that’s a bit of good news. Meanwhile….

Once the CCSVI Alliance website is up and running later this month, I'll send emails or letters to many IRs/vascular surgeons with a link to that site. I'll tailor those letters not to studies or research, but to diagnosis and treatment of CCSVI, and the business as well as humanitarian aspects. (For those who respond, I'll underscore the necessity for proper education on the latest CCSVI techniques and protocols.)

I'm also planning to attend some local NMSS functions, prepared to speak up about CCSVI and hand out info to those with open minds and interest.


EMAIL Subject: CCSVI Screening (Chronic Cerebrospinal Venous Insufficiency)

Hello Dr. Shortell,

Ten years ago I was diagnosed at Duke with secondary progressive multiple sclerosis, and I’ve been keeping up with research developments since then. In my opinion, by far the most promising and exciting news in the past decade is the discovery by a team of Italian doctors of impaired blood drainage from the brain in many MS patients (due to so-called Chronic Cerebrospinal Venous Insufficiency, or CCSVI, involving one or both interior jugular veins and/or the azygos vein), and the frequent dramatic reduction in various MS symptoms which resulted when the blockages were eliminated through balloon angioplasty with or without stents. (For first-person accounts, see http://www.thisisms.com/ftopict-8346.html.)

While the formal research is still in early stages, based on the preliminary results I believe it is unnecessary and indeed foolish for me to wait any longer to have this testing done. While the risk of stents in a vein at this point may outweigh the potential benefit for me, if I were to have blockage(s) I would certainly be amenable to the balloon angioplasty (while recognizing that re-stenosing has occurred in about half the treated jugular veins, and about 5% of the treated azygous veins). Progression of the disease continues….

My question is whether or not your department is presently equipped to do CCSVI screenings using the protocol developed by Dr. Paolo Zamboni, and whether you have done any such screenings. Do you plan to do any, or conduct a study regarding CCSVI and MS? If so, I have a great interest in participating.

I eagerly await any information you can provide about Duke’s present or planned involvement with CCSVI screening and treatment.

Thank you!

Sincerely,”
CCSVI:  Making Sense of MS
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Postby magoo » Sun Jul 18, 2010 2:25 pm

MS HOPE,
Thanks for the news about Dr. Mowatt-Larssen at Duke! I am so excited he is awaiting IRB approval to study CCSVI!!!!! When I spoke to him he was really interested in the CCSVI connection to MS. I think if he gets his approval people in NC should try to see him.
I met a woman here in Charlotte today who is pursuing treatment. We had a great talk.
Keep fighting rssugg!
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 MS_HOPE » Sun Jul 18, 2010 3:16 pm

You're welcome, Magoo. I'd actually posted the news (about Duke's planned study) on TIMS and Facebook a few weeks ago, but there are so many topics and threads it's easy to miss things! One clarification - he hasn't submitted the IRB proposal yet. He's working on it, with neuros, I gather.

I'm thrilled to hear of your excellent results - gives one real hope! If you know of anyone who'd like to join me in the Triangle at one of the upcoming MS Society functions, to inform others about CCSVI, let me know!
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Postby magoo » Sun Jul 18, 2010 3:24 pm

Yes, I missed it. Too many threads to keep up with!
Well, I hope his proposal is successful when he submits it.
I don't know of anyone in the Triangle, but I'll let you know if I find someone!
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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