This Is MS Multiple Sclerosis Community: Knowledge & Support

I need some help putting together an information package regarding CCSVI and the Liberation treatment to forward to surgeons in my area.

I have already sent an information package to the ultrasound lab here. They were very impressed with all the info I gave them (all of which was acquired here at TIMS), and they are excited to do the testing, they only needed a referral from my GP.

I met with my GP today, and everything is running smoothly for testing, the next step is to get someone on board for treatment, but I am completely burnt out. I know where all the information is, but I really don't have it in me right now to put it together in a cohesive package.

If someone could do this for me, and possibly add it to the stickies so it is available to everyone, I think it would be extremely advantageous.

foreignlesion,

This website has all the CCSVI organized efficiently. Any doctor should be able to scan through this information and find Dr Simka's protocols and Dr Haacke's protocols, plus links to all the research papers. As to the Liberation procedure itself, that is still "in the process". Dr Dake will be running a clinical study of the procedure. Good luck.

http://csvi-ms.net/en

ozarkcanoer

foreignlesion,
see second post (MRhodes) in this sticky thread
http://www.thisisms.com/ftopic-7098-day ... asc-0.html

it has what you want, and I think is constantly updated, so no need to scramble around.

Good Luck with it all !!

Shye,

That is exactly where I got the info for the u/s lab that I am currently in contact with. I have been through all of it, quite a while back, and I have been keeping up with many of the latest updates.

My issue right now is, I currently unable to go through them again. I don't really want to go into a sob story of what I'm going through right now, as I am sure there are people here who have been through or are going through worse.

I would really appreciate someone helping me write up a cover letter, attach two or three of the most important and current research publications, and the list of important contacts. I know they are all here, and I know where they all are, but for some reason I just can't put them all together.

I understand what you mean, foreignlesion, Best Forum Member Name Ever IMO. The info is there and it is wonderfully comprehensive, but it's hard to wade through it all and figure out how to keep it down to a reasonable package. I have to do this for myself very soon before I lose use of my hands and will gladly share. If you need me to write a letter I can do that too.

If anyone has already done this successfully and would like to share how you did it and what you included, that would be awesome too. (If it was already posted I apologize for missing it, I'm in a bit of a rush at the moment so can do a thorough search later when I have more time.) Otherwise I will submit my package here to the forum members for critique before taking the big plunge.

Don't worry, FL, you don't have to do this alone and besides, telling the story of your own personal struggle is what the forum is for. Somebody might just be able to identify. There will always be people who are either worse or better off. Nothing you can do about that.

Wishing you the best,
Pam

sorry ForeignLesion, as I too often do, read quickly so misunderstood. AND i DO know where you are, for sure--just still not used to mixing with others in the same boat!
I am having the same problem, trying to get together info I need to convey to someone--it is in my field, I know the facts, but having a hard time getting it from the different sources and merging it into one smooth presentation.

I do have a deadline, and if I meet it, will then be freer to help you.
I'll check back here by Sat. eve, 30th Jan.

Meanwhile, a search here on site located this thread:
http://www.thisisms.com/ftopict-9733.html which I just went thru quickly-

Sharon suggested using the following, esp for neurologists:
http://msassociation.org/news_center/ar ... sp?a=ccsvi

Cheerleader elsewhere posted, and it was included in this thread, the test protocols http://www.facebook.com/notes/ccsvi-in- ... 5095842210

Fiddler posted this possible format for letter to drs on his blog
http://www.my-darn-ms.blogspot.com/

Saturday, January 16, 2010
Suggested wording of letter to doctors
Here is the suggested wording (slightly altered by me) for a letter developed by TiMS contributor GetActve to send to appropriate local doctors (perhaps especially interventional radiologists and/or vascular specialists):


Dear Doctor XXX,

As you might have heard the newest idea for MS treatment/cause is Chronic Cerebrospinal Venous Insufficiency. I have included an article from the MSAA's medical director about the idea (see link http://msassociation.org/news_center/ar ... sp?a=ccsvi for a copy of the article). There is a lot of research going on about this right now.

It was so interesting to read today about the history of this research, starting in 1860 when a doctor said MS was a venous disease. Of special interest to me is the research of Dr. Putnam where he actually produced MS type lesions in dogs (1935) by compressing veins. He then tried to treat MS with blood thinners unsuccessfully, and his ideas were dropped as others have spent the last 70 years treating MS as an immune system disease.

Please consider treating these vein problems as Dr. Dake at Stanford and doctors in Albany NY, Italy and Poland have been doing. This is going to be a huge thing for the interventional radiologists to be involved in!

Thanks
zzzzzz


And below is a compilation Fiddler posted on the above mentioned thread:

Here is what I have on my blog so far:
Quote:
Here is some information that could be provided by MSers to interventional radiologists, vascular surgeons, neurologists and family doctors who are interested in learning more about diagnosing CCSVI. If anyone knows of other or better links, please let me know.

Dr. Haacke's protocol for detecting CCSVI when using MRI/MRV: http://www.ms-mri.com/potential.php.

Dr. Simka's protocol for Doppler Ultrasound is here: Simka Doppler protocol link and a paper describing the same here: http://csvi-ms.net/files/multiple%20sclerosis-USG.pdf

Another site is http://csvi-ms.net which contains the following info (perhaps including links to Zamboni's protocols):
What should I give my neurologist?

Last modified: 13.09.2009 - 08:35 CET
I would like to inform my neurologist about CCSVI. What should I give him or her?
We recommend you give your neurologist the following material:

1. The PDF files of the bold written articles of
http://csvi-ms.net/en/content/publications
should be printed (the PDF links are at the end of the line),
2. the research foundation
http://www.fondazionehilarescere.org/
should be mentioned since there are all the important articles of Prof. Zamboni listed,
3. and the information of the Bologna conference (08.09.2009)
Program (PDF)
Press release (Word)
should be printed out.

Optionally, a link to this website http://csvi-ms.net could be added, as there are other important links listed and the site is regularly updated.

And a later addition (though perhaps a duplicate of other information):
http://www.facebook.com/notes/ccsvi-in- ... 5095842210


Anyway FL, I have no more time (or brain-energy either )right now, but as I say, I'll be back--this is all centralized here now, so I (or someone else) can work it into better format--but I think it covers all you will need. And Pam hope this helps you also.
And of course, the sticky idea for the end product is great.

Thank you very much Shye......this is a big help.

Love it. Thanks Shye.

ForeignLesion, if you PM me wtih your email address I can forward you on a pack (diff pdfs) that I put together for my brother's GP.

It's basically a pack I'm putting togther hoping he can then bring that to other radiologists and consultants.

You might have all of it already, but if it helps, you're very welcome to it.

ForeignLesion
Just recalled this thread:
http://www.thisisms.com/ftopict-9775.html

see very first post--it is all worked out there!

Good luck. Keep us posted.

Here's an excerpt from one of the the radiologist's forums. It's interesting as heck to hear their dialogue.

"I did my first patient for CCVI who has MS.
The test was normal. I read all of the hand outs brought. It was very explicit. I am at home without the handout.
Will include it tomorrow. This test has to be very structured and duplicated for each side for comparison.
Don't know that I really knew what I was doing.
I also looked at the IVC at the suggestion of our neuroradiologist.

bil transverse IJV's measure inferior and superior,, all diameters measured.
" with valsalva, supine and then 85 degrees sitting upright head resting.on a pillow.

Doppler triplex normal respiration, valsalva with release, velocities measured inferior and superior jugular.

Valsalva and release velocity trace is hard to do within a few seconds.. but I was able to see the changes.
Obviously the velocity decreases with valsalva and increases with respiration.
I will read over the literature.
Is this going to be a test for every patient with MS?
... Oye the pressure.
Well we will see how the vascular radiologist reads it."

So it sounds like he is not confident yet, but going to read and learn the proper protocol. And a big THANKS to the MS Patient who brought the information packet for the radiologist! This is a revolution being brought about by the “little folks”, each of us taking one step at a time, each in our own way. The momentum is truly growing and I‘m proud to be on board.

Lora