Implications of New CCSVI Phenomenon - For Me

This is what I wrote in reply to one of my blog readers who expressed astonishment at this new information and concern about what it's implications might be for MS sufferers who are hoping that CCSVI is found to be a large part of the answer to our health problems:

I can’t even get my mind around all those implications: is this a rare occurrence? Does it happen only to “pancaked” veins (I updated my blog just now because later in the thread prof8 says that his veins were flattened, which is not what people usually think of when you say narrowed)? Could there be a dietary or lifestyle cause for it? And, more personal ones like: what if, when I go to Poland, they find nothing wrong with my veins? Does that mean that I’ve never had CCSVI and that I have to look for a cause elsewhere, or does that simply mean I don’t have it at the time of the test? Again, many more questions than answers.

For my own situation, I think it means two things: 1) things may be more complicated and so IF I have CCSVI and the liberation is done, my chances of recovery are a little less clear and certain and 2) given these complications, it may even be more years than expected before “liberation” becomes an accepted treatment for MS in Canada. Overall, that makes me all the gladder that I organized the trip to Poland now.

Strange CCSVI Phenomenon

One MS sufferer who had been diagnosed with CCSVI (two "pancaked" or flattened lower jugulars and one slightly blocked upper jugular) by Dr. Dake in Stanford and was slated to be "liberated" in December until the Stanford procedures were shut down has a strange story to tell. Since he couldn't get the procedure done by Dr. Dake, he convinced an interventional radiologist to fix the lower jugulars with angioplasty on the basis that, regardless of possible impact on MS, blocked veins should be fixed.

However, when the radiologist tested him this time, several months after Dr. Dake's tests, the stenoses in the lower jugulars had disappeared (though the other slight stenosis in the upper jugular hadn't changed.  The radiologist was astounded and the patient (prof8) is asking others if they can think what this might mean.  Do veins sometimes open (and close) spontaneously - perhaps explaining RRMS?  Could a change in diet have produced this result? Are the small number of MS sufferers where no CCSVI is found simply cases where the veins opened up spontaneously (and perhaps temporarily) in the time for the test?

You can follow the discussion about this case tn the TiMS thread: http://www.thisisms.com/ftopict-10465.html

Annals of Neurology - Article and Response

Here is a link to an article in the Annals of Neurology journal that basically advises MS patients to wait (for five to ten years) to be treated or even TESTED for CCSVI:
http://www3.interscience.wiley.com/cgi-bin/fulltext/123299953/PDFSTART?CRETRY=1&SRETRY=0

In rebuttal, Ashton Embry argues that the authors of the AN article were premature (it came out before the BNAC results were published), wrong and very likely in conflict of interest (given the relationships the senior authors have with drug companies): http://www.direct-ms.org/magazines/Embry%20Open%20Letter%20to%20Khan%20et%20al%20regarding%20CCSVI.pdf

My own take on it is this: What kind of doctors/researchers would dissuade people from even being tested for what might be an initial cause and contributor to the progression of a horrible, debilitating disease? Nobody yet knows how much permanent damage can be reduced if CCSVI is detected and treated - rate of progression is extremely individual - but in most cases there is significant deterioration in that amount of time. In five years, MS can result in a huge reduction in the quality of life and irreparable damage to the brain and nerves even if you are able to take drugs to slow the progression - and these drugs themselves carry significant risks of side-effects, such as cancer and death!

Oh well, at least they weren't as bad as that jerk Freedman who is still saying that CCSVI and the liberation treatment are just a hoax, despite the already huge but still growing evidence to the contrary!

"Cured" of MS because of Liberation Treatment

Although it is unfortunate that the article has the word "cure" in the headline (CCSVI supporters don't want to alienate the medical establishment or give false hope to MS sufferers by calling it a cure), it does tell a very hopeful story of the recovery of a UK MSer (Martin Jones) who has had the liberation treatment in Poland:
http://www.thisissurreytoday.co.uk/reigate/Miracle-MS-cure-feel-born/article-1841829-detail/article.html

This "liberated" MSer has also told his story in the TiMS forum. You can follow the posts of "wonky1" from the time he learned of CCSVI, through his two liberation procedures (his veins re-stenosed the first time) to his current improving status.  Simply do a forum search for the posts (not topics) of wonky1 in the CCSVI part of the www.ThisIsMS.com forum, asking for the results to be shown in descending order.

CCSVI Assessment and Treatment in Albany New York

A friend from Montreal has sent me this information:

Hi Ted,
As you requested here some info on Dr Mehta's study in Albany, NY

Dr. Mehta, a vascular surgeon in Albany, NY is starting a study soon and is taking names now (for balloon angioplasty only). Dr. Mehta knows neurology, MS and CCSVI and is committed to helping as many MS patients as he can. Dr. Mehta is a friend of Dr. Dake at Stanford and he's been in very close contact with Dr. Dake about testing and treatment.

If anyone is interested in having CCSVI testing and treatment (if indicated), you may call Dr. Mehta's office at: 518-262-5640, which is located at 43 New Scotland Ave., Albany, NY, 12208. Dr. Mehta has said that he will need the month of February to finalize a protocol and treatment plan, so they are planning on contacting people in March to begin getting evaluations done, etc.

Write: MS Research Study in the subject line.

They are still waiting on approvals and are shooting for March. They will contact those who are on the list...

For more info go to this thread on TiMS forum: http://www.thisisms.com/ftopic-9998-days0-orderasc-15.html
Take care, Mike

Tickets to Krakow

Our flights are booked - to Krakow.  We'll spend a few days seeing the city before being picked up and taken to our hotel in Katowice.  We've been told that Krakow is more interesting than Warsaw.  Hope they have good borscht and perogies!  :-)

MS-Direct Analysis of BNAC Study Etc: A Call for Action

This is interesting.

Direct-MS has posted an article which analyses the new results from the University of Buffalo and Georgetown University and recommends appropriate actions on the basis of this scientific analysis.

http://www.direct-ms.org/magazines/Embry%20New%20CCSVI%20Data%20for%20Guiding%20Actions%2002%2010.pdf

My dates in Poland and other information

The following is an e-mail exchange with Euromedic in Poland that provides some explanation for their payment and refund policies (and sets my dates for "liberation"). Note that the Euromedic responses are in bold italics:

Hello Dr. Simka,

I hope you are enjoying your visit to Canada.

I understand from other patients that Euromedic is requiring pre-payments for the entire assessment, consultation and (if appropriate) procedure, as well as the in-country logistics. I understand the reasons for this, but may I suggest the following:

1) that patients prepay for the assessment and consultation and logistics (with Euromedic promising to reimburse us if we are unable to go, for whatever reason, as long as they are notified one week in advance, or regardless of how long before if we have to cancel due to medical reasons).
2) that we will bring travelers cheques (or certified cheque, or cash or some such thing) for the rest which we will give to Euromedic once it has been ascertained and agreed in the consultation that a liberation procedure is appropriate, but before the liberation treatment is done.

I think this is fair to everyone. Euromedic makes sure it gets money for all work that is done, and patients don’t send money for procedures they may not get and then be forced to chase after Euromedic administrators in order to get their money back.

...Ted

Dear Mr Ted,


Answering your questions:


1 - We require prepayment just two weeks before the treatment - during that time, there is still possible for us to place somebody else in case of resignation. If the patient resigns few days before, we will not be able to give this place to anyone. The line of waiting ones is very long - until 2011 and our main task is to avoid empty slots


2 Travel cheques are not widely accepted in Poland and the commission for them is very high so it would be another unnecessary additional cost.


Please trust us, we really do our best to provide effective and affordable solution for the patients.
--
Marek Chorazy
Patient Coordinator
Euromedic Poland

Thank you for your answers, Marek, though that still doesn't tell me how we get our money back if the doctors decide not to do a "liberation treatment" because no CCSVI was found or because its cause is not treatable with angioplasty or stents. If you could let me know what the procedure for that would be, I'd appreciate it very much.

Also, could you tell me when you expect me to have my specific dates for travel to Poland? Besides making flight plans, my wife has to organize time away from her work, and the sooner we know the dates (or even the approximate dates) the easier it will be for her to make those arrangements.

Here is another thought about if someone had to cancel: some of Euromedic's costs are related to payments made to hospitals, hotels, taxis, etc. Why would Euromedic have to keep ALL of the money if someone became sick and couldn't come at the time of their appointment? Surely the hospitals aren't charging Euromedic when procedures are cancelled?

I want to make it clear: I have no intention of cancelling so it is very unlikely to matter to me about this Euromedic policy, as long as the appropriate amount is rebated if the doctors decide that I can't have the liberation treatment. But Euromedic's reputation is going to suffer if it appears that your policies are a "money-grab" and blatantly take advantage of MS sufferers.

And still one more question, Marek: an earlier e-mail from Euromedic said that the higher prices were in part due to increased insurance. Does this mean that patients do not have to get extra insurance in case there are complications in Poland due to the procedure, requiring a longer hospital stay than expected? If this is the case, then people should know that because then they'll realize they don't have to buy extra medical insurance for the trip.

…Ted

Dear Sir,

Your MRV date is 28 April and Doppler + procedure will be performed on 29 April. You should arrive the latest on 27 April and leave no sooner than 1 May.

The payment policy is : if there is no liberation treatment performed, the patient is refunded onto the bank account within 1-2 weeks. Therefore we ask our patients to present us with the bank account number onto which we should refund them.


If the treatment ends with MRV and Doppler only the patient is refunded 5 100 euro out of previously paid 6 900. If the treatment ends with flebography, patients are refunded 4 200 euro.


Kind regards,
Marta Cyba
Patient Coordinator
Euromedic Poland
--------------------------------------
Dear Sir,
There is still a need for you to buy medical insurance for the trip. The procedure itself needs to be insured as well, costs of it are very high.
However if there are any coplications during your stay in Poland you will stay in hospital longer/ be admitted back and it won't be neccesary for you to pay more.


Kind regards,
Marta Cyba
Patient Coordinator
Euromedic Poland

Note that, while they still suggest that I get "medical tourism insurance", it appears that the main reason for that insurance (medical complications in Poland) will be covered by Euromedic Poland.

The science and politics of CCSVI and Multiple Sclerosis

An interesting article published in the MS Resource Centre in the UK:
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2954

MS and CCSVI - A Patient's Perspective

Here is a post in the "Wheelchair Kamikaze" blog, which provides a very general overview of what the CCSVI phenomenon means to people with MS: http://www.wheelchairkamikaze.com/2010/02/ccsvi-already-success.html.

80% for CDMS Patients - It's Real!

I've just received an e-mail from the Canadian Press medical reporter. The statistics she reported (38% for CIS, 80% for CDMS) were NOT in the BNAC press release - they came from her interview with Zivadinov. I know that these numbers are still causing some debate and head-scratching, but at least we now know that it isn't the result of calculations done by an over-eager, mathematically-challenged reporter: they came from the horse's mouth.

However, she also had some words of caution:

If I may, I would caution that the findings released are very preliminary and it is difficult to assess them without seeing the actual study. A more in-depth analysis of the data will be released in April at a meeting of the American Academy of Neurology, and hopefully the full study will be published in a peer-reviewed journal after that.

And as I said in my article _ and Dr. Zivadinov agreed _ this is not "proof" of progression. It is merely an observational association at this point.

While I would be delighted if there is a connection that could end up in a treatment to help people with MS (including a dear friend of mine), as a longtime medical writer I worry about creating what could be false hope in people with the disease before anything is proven.

Hopefully that will be sooner than later.

Note: CIS stands for Clinically Isolated Syndrome, while CDMS stands for Clinically Diagnosed MS.

Here, again, is the link to the Canadian Press article:
http://www.google.com/hostednews/canadianpress/article/ALeqM5h9fFcp3BUaMrK7YnuZlWEAgfVkvw

Dr. Simka's Presentation in Hamilton

For those of us who couldn't be there:
http://www.ms-mri.com/docs/Simka-hamilton%20-ccsvi-1.pdf
It's quite interesting.

CCSVI and MS on CBC Connect (Video)

Here is a story that the CBC (finally) did that talks about MS, CCSVI and Zamboni. It also includes an interview with a (clearly uncomfortable) official from the Canadian MS Society who says that Zamboni only published his first paper about CCSVI in November and that the MS Society was first off the mark with funding for CCSVI research. You'd think she would have at least found out when his papers about CCSVI were published - she probably didn't bother reading any of them, I suppose. She also didn't mention that the MS Society moved to offer a small research fund only after it started to feel the anger of Canadian MSers.
http://www.cbc.ca/connect/2010/02/new-ms-research-1.html

Zamboni first postulated the idea of CCSVI in 2006, and the first doppler tests were reported in 2007, so there were definitely published results for her to look at before November of 2009.  I can think of many reasons for urging MS sufferers to be cautious about investing all of their hopes in CCSVI and liberation treatments, but I can't see any reason why the MS Society wouldn't properly research the subject. Even if you assume that they just "missed the boat" with regard to knowing a darn thing about the theory and its associated research and clinical results until it was shoved in their faces in November, what's their excuse for not investigating it since then? What the h**l are they getting paid for? I can't see donating any more of my money to an organization like this.

Deficiencies in the Auto-immune Theories with respect to MS

Sotiris, a TiMS contributor from Greece, found this 2005 paper that critiques the neurological community's buy-in to the auto-immune theory of MS causation:

Experimental allergic encephalomyelitis: A misleading model of multiple sclerosis. (full text)

http://www.direct-ms.org/pdf/ImmunologyMS/EAEcritque.pdf

BNAC Study - even more interesting

A Canadian Press story (http://www.google.com/hostednews/canadianpress/article/ALeqM5h9fFcp3BUaMrK7YnuZlWEAgfVkvw) indicates that in the BNAC study, people with more advanced MS symptoms had CCSVI rates of 80%, and that it was people with CIS (only one MS attack in their lives) at only 38% that brought that average down.  I have a feeling that there is more interesting information coming out of that study, as people get a chance to dig in to the detailed results.

Later note: Some people are looking for the source of this Canadian Press story, since these statistics (CIS - 38% and CDMS - 80%) were apparently not mentioned in any BNAC press release. Overall, in TiMS, there is a LOT of discussion regarding what the study results mean and a growing consensus that we need to see the published results (not just press releases) to understand what was done and what the results might mean.

BNAC Study: 55% of MS patients have CCSVI

The long-awaited results from the Buffalo study have been announced.  They have found that 55% of MS patients (or perhaps up to 65%, if some "perhaps-not-really-MS" subjects are excluded) have some kinds of obstructions in their veins.  This is not the 90-95% reported by Zamboni and Simka, and this is disappointing to those who wished to have Zamboni's early results completely validated, but it is certainly enough to say that the theory that CCSVI causes MS has very significant evidence backing it up.  Given the complexity of MS and difficulty in being sure that an MS diagnosis is correct, this is a hugely significant correlation.  Of some concern, however, was the finding that almost a quarter of non-MS subjects were also found to have enough venous deformations to label them as having CCSVI.  Are these people who are prone to getting MS in the future, but are missing some extra "trigger" that causes MS in others?  As is often the case in research, answering some questions just leads to a host of others.

More personally, this means that the risk of traveling to Poland to be assessed only to find out I don't have CCSVI has seemingly increased.  Still, gambling on being assessed with CCSVI and then being "liberated" is the only thing on the horizon that seems to give any hope of stopping the progression of my darn MS.

The press release from the University of Buffalo can be found at http://www.buffalo.edu/news/10937.  One of the major TiMS threads discussing the findings are at http://www.thisisms.com/ftopict-10204.html.

Rebuttal of anti-CCSVI articles in the National Post

Dr. Ashton Embry of Direct-MS (www.direct-ms.org) has published a rebuttal to the two (one by Blackwell, one by Corcoran) National Post articles that called the CCSVI a hoax and/or a myth.  His rebuttal, which is both a good dissection of the two articles and at the same time underlines the reasons why the CCSVI theory gives valid hope to MS sufferes and their families can be found at:
http://www.direct-ms.org/magazines/Embry%20Comments%20on%20Blackwell%20Corcoran%20articles.pdf.

In this rebuttal, Dr. Embry also has some scathing words for the heads of the Ottawa, Calgary and Winnipeg MS clinics who, as quoted in the National Post articles, argue against the CCSVI theory by either calling it a "hoax" (while not giving a shred of evidence as to why that might be) or provide vague (and unfounded) reasons for why MS sufferers shouldn't spend their time (or, especially "waste" the time of their MS Clinics) looking into CCSVI and the Liberation treatment.

Dr Embry also references a Facebook article by Joan Beal (a very early champion of having CCSVI studied in North America) that uses facts to counter the assertions in the Corcoran "diatribe".  See http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/a-public-response-to-terence-corcoran-and-the-national-post/267753807210.

While Dr. Embry's small, Calgary-based charity (founded upon the diagnosis of his son with MS in 1995) normally focuses on diet strategies to alleviate symptoms in MS sufferers, he has come to be a champion of increased research into the CCSVI theory, since he believes it is the most believable and comprehensive explanation for the the processes that cause the onset and progress of MS.

Both the Embry and Beal rebuttals provide a good summary of the arguments for taking the CCSVI theory and Liberation treatment seriously.

More clarification with respect to Poland

Our friend from the Netherlands who is in the "April intake", but will be going earlier, received this reply from Dr. Simka regarding higher prices etc:

Dear Robert,

You should explain that you are not interested in high standard hotel, assistance, transfers, etc. Consequently, you should ask her for the value of prepayment only for medical procedure. Not having full package might be a little problematic for you, since facilities are in different places, so perhaps you will need a taxi (if you dont come with your own car) - anyway you can save money.

You should understand that most patients from abroad are interested in five-stars hotels etc., but it is not obligatory, of course.

Sorry for prepayments, but this is due to 2 things; 1. the hotel needs money before, since they gave our patients big discount (not your case) 2. some patients from abroad did not pay for the treatment, the hospital wants to avoid this

The price for medical procedure is not much higher from the initial one.

In a case of problem, call me again.

Marian Simka

This clarifies things a bit, though I still question having to do a prepayment for the entire procedure before it is known whether it will be possible to have the whole procedure. Perhaps Robert will find that out for us, as well.  Actually, it's good to know that Dr. Simka is interested in helping patients when administrative issues like this come up.

Buffalo study in mid-February - Probably good news!

For those waiting for news from the Buffalo Neuroimaging Analysis Center study into CCSVI, the February 4th newsletter from the Director indicates that the results of the testing of 500 MS patients will be made available in the middle of this month:
http://www.bnac.net/wp-content/uploads/2010/02/bnac_newsletter_02-04-2010.pdf
So, I guess there will be no announcement about the Buffalo results at the Hamilton conference on Sunday, after all.  However, the tenor of the newsletter (almost giddy?) AND the plans for second phase tests AND for making CCSVI assessments generally available AND for testing of alternative "Liberation treatment" procedures would lead me to step out on a limb and predict that when they do announce the Buffalo study results they will say:

1. CCSVI is REAL
2. CCSVI is HIGHLY correlated with incidence of MS
3. Treating CCSVI in MS sufferers will likely improve their situation, at least slowing the progression of the disease.

Well, they probably won't SAY the last one out loud, but their actions will speak louder than words.

It's remarkable to see such a stunning discovery in my lifetime, and at a point where I should at least get some benefit from the discovery.

Poland - Paying up front?

One of the "April intake" for Dr. Simka's clinic, who had already made travel arrangements (because his appointment was pushed up to March, I believe) received this message from the Euromedic patient coordinator today:

We are very sorry but will you please cancel your hotel reservation?

As of 15th February we are offering only the full package of treatment (which includes all the costs of examinations + logistics package:

accommodation + transport).

The whole cost is 6 900 euros, the cost of accommodation and transport is only 500 euros.

As you can see, the price of accommodation (four star hotel Qubus, 5-nights stay, http://www.qubushotel.com/) is definitely not much.

We kindly ask you to pay the full price of the treatment together with the logistics package (treatment, accommodation and transport - 6.900 euro in

total) via bank transfer at least 21 days before the day of your arrival.

You will be given the account number and all the necessary details in the nearest future.

Yours sincerely,

I've got a feeling that some people have been having the treatment and not paying.  However, you'd still think they wouldn't demand ALL the money up front when it's not even certain that the patient will be getting ALL the treatment.  I suppose they don't want to use credit cards because of the fees.  It looks like some people will be having this out with them before I will.