This Is MS Multiple Sclerosis Community: Knowledge & Support

Good to see them finally catching up

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

The financial interests declared seem to centre around companies who are vendors of "MS" DMDs. He seems to want to be saying like Dr. Zamboni, keep taking your DMDs. I think it is interesting that he obviously used the word "prevalence" but was quoted as using "prevalent." The difference is that one is technical, and the other could be interpreted as saying these studies prevail.

He is saying the disease of CCSVI exists, but that "up to" 1 out of every 4 people also have it. That is tantamount to the common criticism that these insufficiencies are "normal" anatomical variations, to be expected in normal anatomies. But isn't it true that a) the diagnosis of CCSVI was not performed by people who had ever looked for it before, b) the study was the initial, smaller study, which also showed a lower prevalence of CCSVI in MS than he eventually found, and c) he is now advocating new measures to test for CCSVI that are invasive? I will not pay much attention to the "normal variant" argument, especially when he used relatives of people with "MS", and the MS patients were already showing higher CCSVI.

This interview carries a lot of weight because of his work, but my eyes gloss over when I am told even more money must be spent before we can even diagnose, on SWI, MRI, MRV, IVUS, etc. There's nothing that special about it. If you have MS you should be screened with expert Doppler, and if still unsatisfied, given the high prevalence, only if that test comes back negative should you request further tests. Insurance, if you have it, should pay. There will always be the repeated cry of "more studies!" Whether or not to attempt a diagnosis of CCSVI in normals or people with other neurological diseases is best left to the people and their doctors.

As far as the treatment goes, I think people should not waste time worrying how CCSVI is related to MS; that is for researchers to figure out. If the results from the Saskatchewan study corroborate Dr. Zamboni's papers, on the strength of QoL alone, nobody callng it experimantal will have a leg to stand on. Insurance should at least be asked to honour claims that had previously been refused. If their red tape moves as fast as government studies, the evidence will be plain, before any checks are issued.

I don't wish to demean Dr. Zivadinov, because he has many constituencies to satisfy, and he is obviously as interested in the truth as anyone. Just that everybody needs to remember their salt grains.

He didn't talk about it here, but I think he himself found one of the smoking guns of CCSVI: new veins collateral to the Internal Jugulars in more MS patients than normal. I don't know if figures are available. These do not even form unless the Internal Jugular is insufficient. They are triggered by hypoxia (shortage of oxygen in the venous blood).

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

To quote myself (always dangerous) chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic18063.html:

So I agree with Prof Zivadinov. I would say venogram ALONE is not the gold standard. I look forward to the discussion on the best methods for pwMS to seek for diagnosis. The problem for most pwMS is that MRV requires a very expensive piece of equipment, which they have in Buffalo. However such equipment is not available in most clinics.
The screening tool for CCSVI syndrome should be operator independent and cheap. I like the idea of the neck collar (from Prof Zamboni), it needs more reasearching. The procedure should be affordable for pwMS. I have 'put my money where my mouth is' and have had catheter venogram and intravascular ultrasound. Yes 10K USD is not cheap but it is the cheapest current option, which meets the gold standard diagnosis.
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

I hope that this is not perceived as advertisement, but FYI, since you visited, the Gold standard of venography and IVUS at my shop has been reduced to US$9000 for first treatments. In the majority of second treatments, i have found that prior IVUS is sufficient and thus the price drops for most of my patients to US$5000 for repeat treatments. In only a very few have I thought I needed another IVUS.

Thus we can look at this "investment" in IVUS to be "amortized" over time to less that the one time price.

It is funny how the role of IVUS evolved. I only used IVUS because i needed to resolve something Zamboni said to me after my first procedure. I thought about using an IVUS that was locked in a closet gathering dust. On the second case of CCSVI I treated, I saw things with the IVUS and just kept using it, now for almost 500 procedures. The revelations came over time, not at once, but the value of IVUS was perceived immediately. If the IVUS had never been in that closet, it would have taken years longer to reach this conclusion, if at all.

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Hello DrS,
I hope that ThisIsMSers welcome the info that you have reduced the charge from 10K USD to 9K USD. However with the sinking GB pound, it will be the same cost for me!
I appreciate that you use previous IVUS results. However, I have a question:
For how many months/years does an IVUS examination remain valid? (June 2013 will be 2 years since I visited you).
I know that Interventional Radiologists think of CCSVI syndrome as a congenital syndrome. I tend to the view that CCSVI syndrome is an epigenetic syndrome. My view is that the genome of pwMS have genes to produce CCSVI stenoses and some environmental factor triggers these genes after birth, maybe in adolesence, maybe later in life. Evidence for my thinking is that stenoses seem to develop with the longer one has had MS (see Yamout et al paper).
So if/when I need retreatment I will factor in a repeat IVUS, just in case more stenoses have developed.
Kind regards,
MarkW

Yamout B, Herlopian A, Issa Z, Habib RH, Fawaz A, Salame J, et al. Extracranial venous stenosis is an unlikely cause of multiple sclerosis. Mult Scler 16(10): 1156–1172.

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

Mark, i am not sure that i agree that stenoses develop the longer one has ms. I am of the opinion that the valve become thicker with time and with many environmental, infectious problems. Thus the stenoses become more visible on ultrasound with time. I think that IVUS is superior at detecting immobile valves, even when the valve is not particularly thickened. Hence its advantage.

I have had only a few cases where i have repeated the IVUS (patient preference, incomplete prior IVUS, for example, before I became convinced of the renal vein's involvement in ccsvi.) In all of these, stenoses were in the identical locations. New stenoses are likely post angioplasty strictures and readily seen on venography. I think IVUS is most valuable in repeat treatments for its ability to accurately select balloon diameters. In these situations, the first IVUS is quite adequate.

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

mark,
Did you understand that the basic fee for you , as a return patient, is not US$7,000 + $2000 for IVUS but $5000? Has the pound dropped that much?

S

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Hello DrS,
Accepting that stenotic valves become thicker with time, leads me to conclude how important an extremely detailed early diagnosis is with CCSVI syndrome. It is vital to detect the stenoses in early stages of MS and treat them before the valve thickens. So the tools (venogram and IVUS), a full map of possible stenoses in veins, and an experienced Interventional Radiologist seem vital to me. I realise that researchers do not like doing simple research but I am not satisfied that most IRs are doing a complete diagnosis at the moment. This includes the folks in Buffalo (I know saying this will make me lots of friends).
I realise you cannot say this of your fellow IRs but I conclude that the majority of diagnosis and treatment for CCSVI syndrome is incomplete. I am saddened that pwMS are using their life savings on an incomplete diagnosis and treatment of CCSVI. I have the luxury of being treated twice already and a third/forth/fifth time is affordable if required (even allowing for a weak pound).
Just some thoughts, not sure what to do about them in order to stop pwMS wasting their money.
Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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