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It appears that quite a few people have been putting packages together that gives a basic background of CCSVI as well as documents that describe the most recent MRV and Doppler ultrasound protocols that have been developed. I believe I've found the most recent protocol from Dr. Haacke, (http://www.ms-mri.com/potential.php) but it is not clear to me if that should be considered the most appropriate protocol to pass on to a doctor. Secondly, I'm sure I've seen links to some Zamboni, Simka and/or Dake Doppler (and MRV?) protocols, but the search function on this site is not great for what I'm trying to do. Can someone point me to the right postings and/or send me a package if you already have one made up?

Thanks loads.

...Ted

Somebody must have the appropriate documents linked or summarized... please?
...Ted

Cheerleader posted this link in the big thread. Hopefully it helps.

I'm not sure I like the word potential in there as in potential protocol.
Is that what you were refering to also Fiddler? It just sounds questionable it those terms.

Hi Fiddler,

I'd be very interested to see what you dig up here. I've read lots of posts from people trying to do exactly the same thing so I think it would be nice to pull the info into one place and make it a sticky, then it can be updated as the various protocols are further refined.

Maybe we could also include a letter template that introduces the topic for those writing/meeting their doctors and vascular surgeons.

Hi Mutley,

I've made some progress on this front, thanks to finding some TiMS postings and facebook pages that appear to be appropriate - though I can't promise they are the best ones. If anyone finds any mistakes or anything better, please let me know. As well, as you say, a good covering letter template would be very much appreciated.

Here is what I have on my blog so far:

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):

What I haven't found yet is a nice, brief but clear summary of what CCSVI is and why it might be a primary cause of MS. Sharon, below, suggests:

The MSAA article written by Dr. Jack Burks is a very concise summary of CCSVI plus it is written by a well known and respected neurologist. I have suggested that folks use it, especially when going to their own neurologists.

http://msassociation.org/news_center/ar ... sp?a=ccsvi

It would be nice to have an objective article written by someone who recognizes that an MSer who is failing fast should perhaps not be dissuaded from having CCSVI assessment and intervention.

And, again, PLEASE let me know if any of this is redundant or outdated information. I think this info (checked out and corrected) should be in a sticky - perhaps the moderators can consider that.
...Ted

Hi MechanicallyInclined,

"Potential" is the name of the php web page. I don't know why they called the page that. If anyone finds that there is a more recent/better version of the protocol posted some place, please let me know.

By the way, seeing some random postings from you, I get the impression that nothing is happening (in terms of medical community response) in my home province of Manitoba with respect to CCSVI... is that still true?

And thanks for that link, dialed_in.

...Ted

Fiddler -

The MSAA article written by Dr. Jack Burks is a very concise summary of CCSVI plus it is written by a well known and respected neurologist. I have suggested that folks use it, especially when going to their own neurologists.

http://msassociation.org/news_center/ar ... sp?a=ccsvi

Sharon

Thanks, Sharon. One important point, though, as I note in my edited version above: Dr. Burks says that 50% of RRMS patients who underwent Liberation treatment had relapses, but fails to mention that all of these were found to have had their veins again re-stenosed - ie, they relapsed after their veins again collapsed, which actually reinforces the likelihood of CCSVI being the cause of MS symptoms. A quick glance through the article suggests that there are other "not-complete-truths" in it.

I would also add, as well, that the very cautionary approach taken by the article could be used by cautious neurologists and GPs as an excuse to do nothing for now. Do we not have a summary that is objective, but at least recognizes that someone who is losing ground fast may have good reason to at least be assessed by a competent assessor?

...Ted

Fiddler
To my knowledge I haven't seen any positive response from the medical community in Manitoba on CCSVI. The neuros have taken the position that untill further research has been done, they recommend staying with current treatments. I don't know if anyone is having any luck tracking down anyone in the Vascular field. I've written some letters and I haven't gotten much response from Vascular surgeons, endovascular surgeons or interventional radiologists. I'm guessing that the medical system has instructed those people not to persue this untill it can be proven. Those are just my thoughts.
My thoughts are to try to get in somewhere to get the tests done. If those tests come back positive for CCSVI conditions, then you have a valid reason to ask your family doctor to refer you to a vascular specialist. It's been said many times before here. Unless you hav an open minded neurologist, we know where their trend of thought lies.
In Manitoba, I think the only way to do something is find a place to get tested. That may be out of province or in the US. Then you have grounds to see a vascular person if your tests show blockages or restrictions.I tried getting in for an MRV through a person I know and I had the door shut on me. I haven't exhausted all sources of Vascular specialists yet. I will try them all if I have to.

Ted -

I understand your concern about the article being too cautious. The important part here is we have a well known neurologist (not only in the US but internationally) who has come out publicly and written about the research and has stated the hypothesis needs to be studied. How many times have we heard from people on TIMS say that their neurologist would not even consider looking at the research? Well, now those same neurologists have something on paper from a collegue that says "go ahead read the research and educate yourself".

Previously I have mentioned that this is a process which most of us lay people are unfamiliar. The feedback from neurologists is they have been subjected to many false hopes and cures for MS. Their reluctance to order MS tests and allocate medical resources to CCSVI stems from them not wanting to be a part of an unofficial endorsement of the unproven concept. Until there is more proven data which shows a relationship of CCSVI to the cause and treatment of MS, most neurologists and IR's and vascular doctors (who are outside of a formal study) will not recommend any action.

So, back to the article - it is just one of many steps in this medical process. I know it is frustrating the process is not moving fast enough for the folks with MS. But in fact the grassroots movement and the attention CCSVI has received has caused many institutions and organizations to move forward NOW and not wait until next year.

We must wait for further data coming from Buffalo. Dr. Dake' s report about the testing and procedures he performed should be published in the next couple of months -- it is a report based on data he gathered outside of a formal study. The report is going to be interesting but, it will not be used as part of the scientific protocol which proves anything about CCSVI. Haacke is busily trying to get centers together for a collaborative effort on imaging, Dake will be starting a testing and intervention study, the NMSS is reviewing "letters of intent" from medical centers for funding of studies. There really has been a "fast forward" button pushed.

Sorry for the long post --- and, I kind of got off topic

Sharon

Hi Sharon,

I understand what you are saying and generally agree. I just think that if someone is going to use this article to convince a doctor, they should also go armed with the information that tells the whole story. Burks himself (unless I misinterpreted something I read in another thread in TiMS) later said that he should have clarified the "50% relapsed" statement and there are other statements in that article that are so "cautionary" as to be misleading. Perhaps someone on TiMS has already produced a "clarification" of the statements in the article, backed up by reputable sources, that would tip the scales in convincing a neurologist, interventional radiologist or vascular specialist to learn more.

...Ted

Ted -
You wrote:

later said that he should have clarified the "50% relapsed" statement and there are other statements in that article that are so "cautionary" as to be misleading.

From the MSAA article :

With regards to relapses in RRMS patients, 27 percent of these individuals were relapse-free during the year prior to the endovascular procedure. Postoperatively, 50 percent of the individuals with RRMS were relapse-free as of the 18-month follow-up time, which is a significant increase in the number of patients who did not experience a relapse (also referred to as an exacerbation, attack, or flare-up of symptoms).

All of the RRMS patients whose veins remained open were relapse-free following the procedure. However, the numbers are small and the overall annual relapse rate (ARR) for the entire RRMS group was not significantly affected, since this included those RRMS patients who had a restenosis of the IJVs. Nonetheless, this is encouraging preliminary data.

Ted, what is it that we are trying to clarify? It is stated in the article the 50% relapse rate included those RRMS patients who had a restenosis of the IJV.

Sharon

Sharon, you're right, I'm mixing this up with another nay-saying article that said a) 50% of people had relapsed and b) 50% of people had re-stenosis, implying that the liberation treatment was therefore not very effective - but never saying that the people who had relapsed were the ones who had re-stenosis!

I still say the Burks article lacks sensitivity to the situation of MSers who are seeing rapid deterioration and therefore don't wish to wait for definitive proof, but it certainly is a big leap forward, more so for those of you who have been fighting to get any kind of recognition for so long.

...Ted