Neurologique has launched its Facebook page at www.facebook.com/Neurologique and the discussions are advancing.
One member wrote the following:
There may be a cure for Multiple Sclerosis!Dr Ashton Embry President, Direct-MS says it best in this open letter, http://www.direct-ms.org/magazines/Embry%20Open%20Letter%20to%20Khan%20et%20al%20regarding%20CCSVI.pdf I say,”CCSVI is a known condition in the legs and has been treated for years! Why then can't CCSVI in the neck be treated? Regardless of whether or not a person has MS or not. Let research continue to figure out what came first MS or CCSVI, in the mean time it only makes sense the doppler scanning become a part of ruling out MS or CCSVI and the the Liberation Treatment become a part of MS therapy.”
My answer was:
Thank you for sharing this. While I understand the anger here, it is not clear on what basis the author states: that there is "little doubt that CCSVI is an important factor in the MS disease process in many cases (definitely not all cases)."
Throughout mose of the 'open-letter' Ashton Embry takes a measured approach, but that quotation is unclear to me. If MS itself may be congenital, then once again how do we know if CCSAVI preceded it or not.
I was not an author on the Annals of Neurology piece, but I think it is fair to point out that the CCSVI data is preliminary, because although Dr. Zamboni's paper does not say it is definitive, hundreds (or thousands) of patients are treating it as if it is. They are taking real health risks by having an unestablished semi-surgical (endovascular) procedure. Patients have gone so far as to created Facebook pages with titles such as 'Dr. Zamboni for Nobel Prize.' Websites, such as www.ccsviForMS.com, www.ccsviLiberation.com and www.ccsviCuresMS.com, have crept up as well.
In terms of experts in MS and pharmaceutical company relationships, Mr. Embry writes: "Naturally your advice is going to be “Don’t use the non-drug treatment. Use only the drugs”. How can it be otherwise and that is why advice from those with obvious conflicts of interest is self-serving and worthless." and "...your Point of View is completely out of date and your advice regarding CCSVI testing and treatment is totally compromised and of no value." If he truly feels this way, then I would suggest not seeing a specialist neurologist for MS. Nothing forces patients to seek allopathic and osteopathic physician consultations. If doctors are not to be trusted, then why do patients come to see us? "How can it be otherwise?" The Hippocratic Oath and our dedication to our patients is how it can be otherwise.
Please note, I am not defending either viewpoint and I have made that clear in my blogs:
http://neurologique.blogspot.com/2009/11/going-to-other-side.html
http://neurologique.blogspot.com/2009/12/on-other-hand.html
http://neurologique.blogspot.com/2010/02/ccsvi-does-it-hold-up.html
There is no "war" as Mr. Embry suggests -- the front-line of facing MS is made up of patients, carepartners and doctors. We are the only ones who are sworn to have no other interest (as opposed to all the other 'stakeholders.'
The question is whether testing for CCSVI has utility. What will you do if it shows CCSVI? Would you then take real health risks? Your doctors are sworn to protect your health and we don't know whether performing the Liberation procedure will cause more harm than good.
What do you think?
- Dr. Daniel Kantor, MD BSE
Medical Director
Neurologique
info@neurologique.org
www.neurologique.org
Monday, March 15, 2010
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With all the ms treatments out there, there is not one that will stop the progression of this disease. If there was, we wouldn't be having this debate. The bottom line: eventually ms will progress. So to quote "time is brain" I would absolutely be willing to take the risk. What do I have to lose, you ask? Well, I ask myself this. Is it worth waiting 5-10 years, especially if the conclusion is that CCVSI treatment does work in stopping the progression. But now I have 5-10 years worth of ms damage that is most likely irreversible. If you had a choice of between possibly saving your brain and not, I think you might think differently about taking a risk with liberation treatment. It's my brain and the changes that ms has brought scares the hell out of me as to what the next 10 years might bring. So absolutely. I would be willing to take that risk.
ReplyDeleteThis is a good risk assessment, and it is exactly why other patients have made their own personal decision to have this procedure.
ReplyDeleteThe difference between making a well informed personal choice to have an unproven potentially risky procedure and having a neurologist endorse it, is that it would be irresponsible of a neurologist to throw medical science aside and suggest something that a patient is not considering.If a patient is considering it, however, it behooves the neurologist to present the data known thus far (patients probably know it better) and to have a discussion regarding risks and benefits.
I think that means, that there is little debate here and that we are agreeing.
Notice two things, I use the word "may" a lot and I refer a lot to risks vs. benefits. As excited as I am by the potential utility of the procedure, I still need to maintain a scientific, unbiased view. On the other hand, patients cannot afford to wait another 2 years; this is why I have devised a protocol that will help patients receive the treatment, while also producing vital data on its utility. Such a concept will not delay treatment, but will, potentially, help answer the question.
For this, we need funding and we are applying for this -- and you will hear more about it soon (applying for funding and receiving it also takes a significant amount of time without a grassroots effort, akin to the LDN community's successful efforts).
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