This Is MS Multiple Sclerosis Community: Knowledge & Support

thanks tilde

very interesting report from norway.
it is for you that i stay here and continue to teach. I do hope that you will from time to time ask a question or make a comment.

happy new year

DrS

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

http://www.erinelster.com/files/jvsr%20 ... d%2081.pdf

I was one of the subjects in this study by Dr. Elster. I do not agree that my problems should be attributed to the disagreement I had with that horse many years ago, but I do strongly support the hypothesis that the misaligned C1/C2 was impinging on the jugular vein and contributing to the MS symptoms. Fortunately, the stent that Dr. Sclafani placed in that jugular seems to have resolved the problem so I no longer need the upper cervical treatments. That is even more fortunate because Dr. Elster has sold her practice and moved on, plus she would no longer treat me with the stent in place. I hope you will comment on the paper, Dr. S. It has been eleven months since you treated me and everything is great. Great thanks for choosing this route.

Emma was treated in Scotland by Donald Reid. Unfortunately it appears procedures are no longer being offered in Scotland do a huge hike in insurance cover. See this thread:- chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic21029.html

We chose Scotland as we live in the UK. We didn't like the idea of travelling abroad for treatment and we also liked the fact that follow up was here in the UK. Although we do live South of London so it's not exactly local (nearly 400 miles away).

I think you'd probably be surprised how many people will travel to New York to see you as a direct result of your postings on this forum and your openness and willingness to communicate with pwMS and particularly people non medically trained. It's actually very refreshing. Your manner and relatively easy to understand explanations give people a confidence in you.

Here in the UK there is a reluctance to suggest anything not seen as safe and acceptable medicine approved by the National Institute for Health and Clinical Excellence (NICE). Potentially a practitioner may be struck off if they are seen to be referring a patient for alternative or experimental treatment not normally in the mainstream. It has lead to a member of our House of Lords proposing a Bill to address the situation here:-

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic21305.html

Emma Neurologist recently referred to CCSVI and skeletal/Jaw realignments as "snake oil". This was after making four separate attempts to convince Emma to start Copaxone again (despite the UK MS Society having withdrawn their support for the scheme that offers this in 2010 due to it's ineffectiveness). I was livid, more so because of the closed minded nature of these people.

This is the official line on CCSVI from the MS Society.:-

http://www.mssociety.org.uk/ms-news-and ... arch/ccsvi

The problem we have with the MS Society is it's very deep and long running relationship with Pharamaceutical Companies right at it's very core. They have to appear to be considering and supporting alternative therapies and ideas without being seen to bite the hand that feeds them.

thanks

so strike off england and scotland from treatment options. So bizarre coming from countries that were so instrumental in the development of thoughtful approaches to surgical treatments.

Are there facilities that will do ultrasounds? Can you speak with your primary care providers about alternative treatments? Is there pressure to chastise and condemn doctors that are curious or supportive?

Is there any country that supports ccsvi research and treatment beside Kuwait?

DrS

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

The Greek experience : There is one medical center performing accurate Zamboni's protocol ultrasounds.
There are two or three IRs performing venoplasties, although CCSVI is not their primary field of expertise.
There is no governmental interference in venoplasty treatment. Any patient could be treated for CCSVI, although it's not officially a recommended procedure for MS patients.
Neurologists are in deep denial about the CCSVI issue. Some of them have talked about it in tv shows, describing ccsvi treatment as dangerous. The main speaker thought that venoplasty for MS diplopia should be performed in the optical vein . The rest were talking about the famous placebo effect.

Greek patients on the other hand are very well informed about CCSVI.
There is a blog about CCSVI in Greek (http://ccsvitalk.gr/blog/) since January 2011

I think that a great number of patients have travelled across the Atlantic to be treated in Brooklyn until now.
Maybe Greeks are adventurous.
Maybe New York is a helluva town

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getafix

hi dr. sclafani, i hope you keep in mind that when ccsvi came about and you were starting to treat "i could be wrong" but i think dr. zambonni research was pretty new and he had done the only published paper. you were one of the first "maverick" ir's that decided to follow in the usa and treat ccsvi. it was new and i along with many appreciate your perseverance and staying with us as more is learned and more are helped.

although, chiropractics is not a new idea of treating it has been treated with prejudice by mainstream med. for a long time. so, you'll find very few published papers and peer reviewed things. but, you will find testimonials here on tims and elsewhere of it's positive effects through history. and, now with the upright mri more proof.---even dr. amir that is treating ejc's wife has no published papers but many of his patients report amazing results.

chiro.'s will never do an ir's job when venoplasty is necessary, ir's will not do any spinal adj. ir's and chiro.'s will not do dental as dr. amir is doing. and orthopedic or neurosurgeons that will come into play soon i hope will do their own thing. but, for the patients sake, getting to a place where all these things are checked out and evaluated will ultimatly bring the best results. getting this all together won't be easy for sure. but, all the above can effect blood and csf flow--not to mention nerve involvement.

the proof is in results--it may at this time, because this is new to you seem like strange bedfellows but as you explore and think out of the box as you have done with ccsvi i think it will get clearer.

Yes indeed....so, what is the question?
(no, i mailed it to you)

rgds,

Robert

So, what is happening in Holland?? ehh..nothing!!
First, it's forbidden by law to do medical prescanning a.k.a. scan 'healthy' persons.
Secondly, ccsvi is dismissed by neurology in Holland. Why? well, there are 2 major hospitals that are seen as the ms centers; VU amsterdam and EMC Rotterdam (there are other neuro's with ms as focus but not from 'university' point of view)

i contacted EMC in 2011, talked about ccsvi and my improvements after angioplasty...they were very happy for me, but veins are not the focus of the EMC MS research.
Now they have a study going on about fatigue and they called me to join. But my fatigue is more or less gone after treatment by dr. S. Again, they were very happy for me

VU is very drug focussed and tries to find genes and cells that could trigger the immune system, they did a small CCSVI MRI study, but did not know what they were doing. Although results were 'mixed' there was no follow up..
There were also two scanning studies done by two other hospitals....and again there were 'some' results, but no follow up.

The missing word in the studies? Expertise.

So, Holland still follows the auto immune hypothesis and attacks the immune system with drugs...
There are still some private clinics in Europe, but the treatments in hospitals are stopped, why? I spoke to one of the hospitals...they stopped not because of the FDA warning (FDA cant warn europe), but for the possible consequences of the FDA warning.

Also, treatments are mostly (except dr Simka) done without any research, only jugs and some azygos. So results are doubtful, most (except 'simple' problems) improvements fade....

Concerning te current status of CCSVI i believe the opinion of dr.S:
CCSVI is not MS, but a seperate condition with similar symptoms; the lucky ones only have ccsvi. ccsvi occurs i most of MS patients. (correct me if i'm wrong Doc)
Does ccsvi lead to ms??? i dont know, but if neurology, IR's and vascular specialists would stick their heads together maybe the progress in knowledge would go much faster.

Lets hope the results of current trials will give a boost and eyes will open.

Why did i go to New York? Because it's the most complete treatment at this moment with the most CCSVI knowledge in an objective view.


My 2 cents,

Robert

With 2 angioplasties and 3 jugular vein bypasses which all produced improvements but unfortunately were short lived. I then had a Fonar upright MRI with Dr Scott Rosa (I am in his study) and Dr Damadian. It showed that my CSF flow, was not draining from my brain adequately. They also did X rays which showed my atlas was out of alignment. I improved with AO adjustments but like angioplasty they too were short lived as I cannot hold the adjustment and slip back out of alignment.So which came first in my case? Impaired CSF flow or CCSVI?
Although provocative, the findings and hypotheses of Doctor Rosa and his associates are sure to be controversial, for many of the same reasons that CCSVI shook things up. Both theories fly in the face of traditional MS dogma, and offer explanations for neurodegenerative disease that differ greatly from those proffered by mainstream neurology. Multiple Sclerosis is nothing if not complicated, and its pathogenesis is almost certainly multifactorial. It’s doubtful that any one theory will prove to be THE key to solving the entire MS puzzle, but, with research, some of these “radical” theories may have the potential to unlock some of the many mysteries held by MS. The exploration of alternative theories, done responsibly, can only benefit patients as doctors broaden their horizons. And start to think out of the box.

http://www.ncbi.nlm.nih.gov/pubmed/22733409

Now the EHC has closed shop on CCSVI I'm not sure - there's certainly nothing openly publicised.



You can speak to the care providers, but as there is a such a strict hierarchy in the UK, if NICE don't approve it, it won't happen.

Currently any medical specialist that refers a patient for alternative therapies puts themselves at risk of being struck off altogether. There is little compulsion or support for medical professionals to look at alternative therapies and treatments. Some such as Osteopathy and Chiropractor are starting to become accepted. This all covers treatment offered by our National Health Service.

Of course if you're willing to pay for private treatment you can have anything you want, pretty much unrestricted. This obviously leads to a lot of problems and sorting the wheat from the chaff becomes a difficult exercise.

CCSVI in the UK has not been stopped by any governing body or threat of legal action. It's been stopped as the insurance to perform the procedure has been increased to a level that it is no longer financially viable for either the patient or the provider.


With regard to the work Dr Amir does on Emma, the important thing to understand is Dr Amir is a dental specialist that has undergone Chiropractic and Osteopath training. Ultimately he is treating Emma as a dental specialist for a TMJ and jaw problem and associated misalignment of the C1 vertebra. A side effect of this is symptoms currently attributed to MS in Emma are being eradicated.

The problems start to mount as soon as it's suggested that Jaw/skeletal misalignment treatments are treating MS.

My understanding of "MS" is it is a collection of symptoms of which the cause is currently not understood. It's a label into which you can place people for the purposes of medical categorisation. Modern drug based medicine is still pursuing the autoimmune line. If you want to anything other than that - I'm afraid you're on your own with no official support.

I would be astonished if in years to come someone finds a single cause of "MS". In fact I suggest "MS" will never be cured, what will happen is it will probably be broken down into it's component symptom parts and each patient treated for the particular problem causing their particular set of symptoms. Be that skeletal problems, vascular problems maybe along with some other issues yet to be discovered. At that point of understanding "MS" will cease to exist as each patient will have been correctly diagnosed with a specific problem causing their particualr set of symptoms.

What is criminal though is that distinct lack of publicly funded or backed research into anything other than drug based "cures".

Dania,

Is there any way you can get Dr Damadian in touch with Dr Amir?

Dr Amir has read his research and the results for the Foner upright MRI as he believes he has important information to add to the study with regard to CSF flow. Unfortunately he draws a blank at every attempt of contact. I'll PM you Dr Amirs Email address maybe you could pass this along if have the ability to do so.

The person, I think, to get in touch with is Dr Rosa. He is the one that has been currently doing a ongoing study for over a year so far. And continues to collect data doing new patients. He can contact Dr Damadian. I do not have his contact info but I can pass your info on to Dr Rosa. It might take time to get an answer as he is overwhelmed with emails.

So what's happening in Switzerland ? Well, not much, at least here in the French part... The official position of the MS society aknowledges the existence of the "CCSVI phenomenon" but does not recommend testing or of course, any other action. One should remember that this is a country of pharmaceutical companies and their influence is very strong. When I first heard about Dr. Zamboni's research, I tried for months to find an open-minded IR or neuro or any doctor really. Needless to say that I didn't succeed and decided then to go to Poland, one of the first places in Europe to offer such a treatment. I always wanted to go see Dr. Sclafani though, as impressed as I was with his attitude and I always had in mind the importance of experience (I believe he was the one who said that an IR had to at least see a 100 or so cases to know what to look for...). When he had to stop treating for a while, I was so dissapointed but kept hoping that he would come back... Which he thankfully did ! So yeah, I've been to NY and I would go again, because I believe that Dr. Sclafani offers the best treatment option with a constant ability to learn and improve, priceless !!!
Otherwise, I finally did find an open-minded IR here willing to do the check-ups, but although she works in quite a big clinic, I'm still the ONLY CCSVI patient she has ever seen...

Thanks dania that's great.

blossom, terrific post, especially about how Dr. Zamboni's work was the only published work about CCSVI when IRs started to offer venoplasty for CCSVI.

Dr. Sclafani, by limiting your research only to peer-reviewed, published studies, you'll be missing out on a wealth of knowledge and new ideas that are included in articles and case studies.

What search terms would you like us to investigate with "upper cervical chiropractic"? Multiple sclerosis? If yes, may I ask why? Many of us believe "MS" is really just a catch-all for patients with neurological symptoms. I believe that searching by neurological symptoms, such as migraine, will give the most information.

Logically, correcting the positioning of one's misaligned Atlas makes sense to me which (for those who haven't seen it yet) is depicted by this animation:



Blue = jugular vein
Red = carotid artery
Yellow = vagus nerve

http://www.atlantotec.com/en/fundamenta ... agus-nerve

edit: included link