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Jjpink wrote:Violin, can you please let us know how your experience was??? Please. Now I really don't know what to do.

Have you requested an opinion/analysis from Dr. Sclafani on your particular situation?

I will post here my Seven Steps to MS Health:

MY SEVEN STEPS TO MULTIPLE SCLEROSIS HEALTH

1. DE-TOXIFY

After a lifetime of eating badly, ingesting antibiotics and other toxic chemicals, exposure to heavy metals and nuclear fallout, toxins build up in the body and need to be flushed out in order to maximize the benefit of ideal, personalized foods and supplements. Check out DETOXIFY on the Internet to find your preferred protocol. One example:
want2bike (From Thisisms.com)suggested
“Dr. Hyman explains his 10 day detox diet.

I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not? (It takes 5 days to withdraw from a food allergy).

See also my Detoxification and Supplements post.

2. OPTIMAL ANTI-INFLAMMATORY NUTRITION.

See C-Reactive Protein – Key to MS Diet

Diet is critical to many diseases, particularly « auto-immune ». However, areas of vulnerability differ. For MSers it’s the vascular system linked to the central nervous system that matters. Diet impacts production of C-Reactive Protein (CRP) – which in turn impacts the endothelium of the vascular system. Secondly, proper diet acts to reduce cellular inflammation thereby preventing spasms in the veins’ smooth muscle layer. It follows that for MSers proper diet facilitates blood/cerebrospinal fluid circulation. For those without a serious veinous obstruction, diet/supplements alone may suffice to heal

3. SUPPLEMENTS

I have been taking a customized Standard Process Supplement Protocol (with additions) recommended by my Kinesiologist/Nutritionist since 1984 so I won’t suggest a general plan.
As to Diet, consider my post Paleo-Macro-biotic diet.

As a general protocol consult Matt Embry’s
http://www.mshope.com. (food, supplements, exercise, CCSVI).

4. ENHANCE BLOOD/CEREBRO-SPINAL FLUID CIRCULATION - CCSVI

Simple blood/cerebrospinal fluid circulation therapies such as massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming may suffice. See Acupuncture blog (which includes Tens Self Acupressure) I do daily Tens Self Acupressure treatments to stay afloat and try to get an acupuncture or osteopathic treatment once a month. A serious venous blockage may require ANGIOPLASTY (PTA). Prior to taking that decision, one might consult a specialist in skeletal disorders (e.g. Chiropractors or Osteopaths) to be certain a bone, muscle, tendon etc is not obstructing the vein. Best diagnostic tool – FONAR Upright Cine (as in cinema) MRI.
Professor Zamboni’s recent "Brave Dreams" trial has cast in doubt the effectiveness of PTA (Angioplasty) except in a subset of MS patients which presumably discredits the CCSVI theory. Actually I would say it only discredits a limited solution to a complicated problem. The Vascular Connection to MS is real, but the origins of obstructions are as varied as their "cure". Promoting blood flow throughout the Central Nervous System requires attention to the individual’s body structure as well as the physiology.

5. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.

6. Homeopathic remedy Oscillococcinum by Boiron to head off a virus. IT WORKS (unless perhaps one is taking a toxic drug. Anti-biotics annul it for me.)

7. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist may help.)
Be moderate in terms of your current condition. Don’t do so much that you throw yourself into an « attack ». (Early on I stressed myself with a « performance » mentality.) Now I walk a minimum number of steps per day and swim when I can.

Be creative. Tif of ThisisMS.com has recovered function with Neuromuscular electrical nerve stimulation in the Onyx Body S haping and Slim Spa which uses “Madame and Monsieur Electro-Slim Technology”. Hugo Macia (http://www.secretosdelaesclerosismultip ... pot.com.es.) is testing on himself a German made Neuromuscular “jacket” to regain function. See https://www.miha-bodytec.com/en/product/

Previously published on my site MSCureenigmas.net http://www.mscureenigmas.net/

Best regards

For those who stumble on that page, as of October 1st 2018, Dr Sclafani does not do the CCSVI procedure

Jut called the clinic...

I convinced myself to have it done at least a dozen times only to talk myself back out of it. Now I'll never know if the procedure would have made a difference in my life.

You will never know for sure but ultimately you could have saved your life by not doing it!

ElliotB wrote:You will never know for sure but ultimately you could have saved your life by not doing it!

Possibly. However, I believe that through the use of IVUS that Dr. Sclafani had revised his procedures over time to make them fairly safe, e.g., minimize damage to the vein wall by not overstretching the vein and also by not using stents in the jugulars. These modifications to the earlier used techniques seemed to reduce complications.

ElliotB wrote:You will never know for sure but ultimately you could have saved your life by not doing it!

Dr Sclafani had enormous experience and his treatment evolved with this experience. I don't think death was even remotely a possibility unless going into a clinic for ANYTHING implies risk of death. That's an exageration. I wonder why he stopped.

Best, Vesta

All medical procedures have their risks.

"I wonder why he stopped"

I could think of several reasons. But rather than guess, the fact that he stopped says enough.

ElliotB wrote:All medical procedures have their risks.

"I wonder why he stopped"

I could think of several reasons. But rather than guess, the fact that he stopped says enough.

He stopped because the clinic he is associated with feared being attacked by the Stalinists in the medical-industrial complex, not because of any harm he had done to anyone. Rather the opposite. These same interests got the FDA to ban the procedure for MS patients May 2012 which means medical insurance would no longer pay, and scientists weren't free to develop appropriate stents. It's power and money at play, not science or patient well being. By the way, death is a possible "side effect' for spinal taps. Do you favor banning spinal punctures? MRIs may damage the kidneys. Let's ban those. Actually, the procedures used to come to an MS diagnosis are harmful, and after all that, MDs don't really have a "cure", just potentially deadly drug treatments. How impressive. in my opinion all this scare mongering about the CCSVI procedure is just group think in the service of a tiny vested interest. I'm for free choice, not dictatorship.

Best regards, Vesta

Brave Dreams:
An overestimated study,
crippled by recruitment failure
and misleading conclusions
Bernhard H.J. Juurlink,1
Pietro M. Bavera,2 Salvatore Sclafani,3
Ivo Petrov,4 Donald B. Reid5

I can't link the whole article for some reason but this was in 2018 and Dr. Sclafani remained in support of CCSVI treatment, stating that

One firm conclusion from this randomized, blinded study is that PTA to correct for CCSVI is safe. This is not a new finding since the safety of PTA to correct for CCSVI had been described previously.

and also

As noted this Brave Dreams study was greatly underpowered and this statistical analysis suggests that on this basis alone further studies are well-warranted and we urge the investigators to continue to enroll patients into their clinical trial and to, especially, dig deeper into the data. There is an abundance of evidence that co-morbidities have an effect on progression to disability in MS and it is, therefore, not unreasonable to hypothesize that problems in venous outflow from the CNS would affect progression to disability.

Cece wrote:

Brave Dreams:
An overestimated study,
crippled by recruitment failure
and misleading conclusions
Bernhard H.J. Juurlink,1
Pietro M. Bavera,2 Salvatore Sclafani,3
Ivo Petrov,4 Donald B. Reid5

I can't link the whole article for some reason but this was in 2018

Try this link.

https://www.pagepressjournals.org/index ... /7340/7175

thanks NHE

It was a well written critique of the Brave Dreams study. Unfortunately, the critics of CCSVI all jumped on the bandwagon and used Brave Dreams' results to pronounce CCSVI dead. However, as the authors point out, the bandwagon had a flat tire (or two).

CCSVI treatment for MS has been around for a long time. Where is the proof that it works?

Yes, skepticism has always been in the forefront. Which is to be expected. This is the way of the world. Some people still feel that the earth is flat. Yet I don't think I have read a single article/study that substantiates that the treatment really, really works. (As is the case for all the 'so called' cures.) And yes, I know, some people claim to have been helped by the procedure. And many say the opposite. And unfortunately some are no longer able to tell their story. But where is the clinical proof that it really works? Have I simply missed it?

And when you have Zamboni himself, the scientist/doctor who called CCSVI the cause of MS admit that he was incorrect and has publicly concluded that “the liberation treatment” for MS does not work, I can only come to one conclusion.

I know we all want a cure, but it appears CCSVI is just another dead end. But feel free to show me otherwise...

I have confirmed with Dr. Sclafani that he is working with a clinic in Poland.

https://ccsvi-clinic.com/en

On Tue, May 21, 2019 11:52 am "salvatore JA sclafani MD" <***.***@gmail.com>
> On Tue, May 21, 2019 at 6:10 AM "salvatore JA sclafani MD" <***.***@gmail.com>
>> On Mon, May 20, 2019 at 11:06 PM NHE <***@***.com> wrote:
>> Hi Dr. Sclafani,
>> Is this CCSVI site legitimate? It says that you and Dr. Schelling are
>> their consulting doctors. https://ccsvi-clinic.com/en Their site is
>> full of generic images from Shutterstock.
>
> yes, i am doing procedures with them tomorrow in poznan. Im awaiting
> a delayed flight in warsaw. I will go from there to the isnvd meeting in
> ferrara next week
> DrS

this initiative is just starting up. it is nice to collaborate with an interventional neurologist for a change

Well, Elliott B. I guess i will have to respond to your glib statement of inferred assumptions that I stopped treating pwms because I have lost faith in the concept or suddenly decided to ignore all the positive experiences. Let me state emphatically, that there is good basic science into the effects of venous outflow disruptions, there is good evidence of safety for these procedures

The truth is that the negative press and the witchhunting done against other caring physicians led my employer to make a business decision to stop offering the procedure at a financial loss. The company is after all a for-profit company and i found their decisions to be reasonable but devastatingly disappointing. It was an anguishing decision that I decided not to continue on alone. But my reasons were of family, of age, and of fear of vicious attacks to my person and my reputation. and it left me quite saddened and overwrought

The more I learn of the existing trials, the more I am confident of my opinion that randomized trials were grossly premature, insisted on by physicians who are not expert in procedural developments and who ironically have been the leads in the RCTs. And remember Brave Dreams did not prove that angioplasty had no value. Actually more patients in the treated group were free of new lesion activity on MRI than the controls who only had immunomodulatory therapy. It just did not have a large enough sample to reach statistical validity.

The resistance to exploration on how best to actually perform this procedure has really gotten in the way of real progress.

For example, I think that the Giaquinta study which looked at outcomes based upon the appearance of the venograms in more than 800 patients showed that some venographic appearances predicted positive outcomes while others predicted futility. That validated what I had asserted for a long time. THATS HOW ONE DEVELOPS A METHOD TO USE IN A TRIAL. Interventional procedures are not like drug research. We dont jump in to a trial without understanding the technical issues. I resent how this was done so prematurely.

Several large studies of hundreds of patients have demonstrated feasibility by showing clinical improvement and safety. I think that the positive studies far outweigh the negative ones. Personally I remain convinced that angioplasty improves perfusions of the brain, and drainage of CSF that enables improvements of symptoms. Since no one has proven the cause of MS, I think debating whether CCSVI is the cause of MS is irrelevant. If patient symptoms improve, then it worth continuing the exploration. This, however, only suggests that further work needs to be done. My work clearly shows the value in ivus for diagnosis and treatment planning. This information was never considered before the first trial was done.

Anyone who has followed the debate over thrombolysis of embolic strokes from discreditation to standard of care knows that
Late last year I was contacted by the CCSVI clinic Poland and asked to provide them with some guidance in establishing their effort. I discussed this with them and decided that they were committed to providing a good caring service with an effort to develop good practices and collect good data.

We have tried two different facilities. The first was not sufficient but the second one which i visited last month gave me hope. The lead Polish physician who performs the procedures is an interventional neurologist and, while his knowledge of neurology is a great plus in assessing patients, his experience with large balloons in jugular veins and IVUS could well benefit from my experiences. We have proceed to work together on patients and i believe this program is worth supporting. With that in mind, I am visiting Poland as often as I can to partner with these physicians. There are some discussions of me treating patients myself there soon.

If there is anyone seriously interested in learning more or going there for assessment and treatment, I am willing to help them.
I am willing to pop in here periodically to continue this discussion.

DrSclafani