FOLLOWED THE GUIDELINES SET FORTH BY THE NATIONAL MULTIPLE SCLEROSIS SOCIETY FOR CCSVI TREATMENT, AND GUESS WHAT ? IT WORKED !

Click on the following link: http://www.nationalmssociety.org/multimedia-library/brochures/staying-well/index.aspx

Chose the brochure entitled: Clear Thinking about Alternative Therapies

Consult page 18 of the brochure....a section entitled: Look Before You Leap



RECOMMENDATION : DISCUSS THE ALTERNATIVE THERAPY WITH YOUR DOCTOR :

Ask for your doctor’s views on the risks, bene?ts, side e?ects, and potential interactions with medications you are currently taking. Also ask about the experience of other patients who have used the same therapy. A frank talk with your nurse may be helpful if you run into communication problems.

MY EXPERIENCE: I discussed CCSVI treatment at length with my primary care physician. She did not accept this at first, and was worried, but totally understood why I chose this route. Upon returning to Canada, she saw my improvements, and was amazed. Since then we have discussed the fact that the benefits far outweigh the risks, and she does not understand the resistance of the neurologicial community towards this rather safe and effective treatment.

RECOMMENDATION: FIND OUT IF THE ALTERNATIVE PRACTIIONER WORKS WITH CONVENTIONAL DOCTORS.

Be sure that the practitioner is willing to refer patients to a physician. Avoid those who do not want to work with regular doctors.

MY EXPERIENCE: Well, this is not totally personal, but here it goes. From the very beginning Zamboni wanted to work with the medical community, especially the neurologists. I suppose we can call them conventional doctors if you consider they are specialists in treating a disease of unknown origin with medications that they are not even sure how they work. (Is this how we define conventional medicine ?) The Polish clinic where I had my procedure provided me with copies of all of the medical reports that I could share with my doctors. However, most of the conventional doctors were not interested in documenting improvements because they say that there is only scientific validity if the information comes from well designed, double-blinded studies. So what was the reaction of the MS community......do them !!! Then conventional medical doctors formed a committee and said, “There`s not enough proof. Let us do a few bogus studies, to make sure that we never get that proof”. So, the Canadian Health Minister took the word of the conventional medical practitioners as pure gospel, and said, “There`s not enough proof !”
Furthermore, many of the foreign clinics are asking their patients to come back for evaluation, and are working with the Canadian conventional doctors who will work with them. I know that I have forms to return to Poland from my doctor, and forms that I fill out as well. You see, the Polish doctor wants to work with the Canadian doctors, but many Canadian doctors won`t ! See the problem here folks ?

RECOMMENDATION: TALK TO PEOPLE WHO HAVE USED THE TREATMENT.

Firsthand knowledge is invaluable. Ask people who have used the therapy about its advantages, disadvantages, risks, side e?ects, costs, and the results they got from it. Try to track down these people yourself. Chat groups like those on MSWorld® can be helpful here. Don’t rely on references supplied by an alternative practitioner or a person who is trying to sell you a product or service

MY EXPERIENCE: I reached out to people the world over. I talked to people in Europe, in the States, all over the place. I developed my set of realistic expectations, and decided that time would be the true test of this therapy. If I were still at the same place a year after the treatment, then I would realize the positive effect of the treatment. I didn`t use chat groups organized by MSWorld, but rather reached out to the facebook community. I didn`t rely on references supplied by an “alternative practitioner” either, but on the studies published in medical journals. True that there were many groups trying to “sell” or “promote” this treatment, but only because I couldn`t get it in the country where I pay my taxes. Most people I communicated with had success from the treatment, and nobody said that it was “dangerous” or “life-threatening” – that discourse only came from the “conventional practitioners !” It`s true, some of my friends ended up with blood clots, and most were dealt with by caring Canadian doctors. Some others are in declining health because they were refused medical care in Canada...as if we didn`t know how to treat blood clots in a first-world country where we claim to have one of the best publically-funded systems in the world !

RECOMMENDATION: INVESTIGATE THE BACKGROUND OF ANY TREATMENT PROVIDER.

Find out about the person’s training and credentials. In particular, determine how much experience this person has had treating people with MS.

MY EXPERIENCE: The surgeon and the medical team had great credentials. By the time I had been treated, his team had performed venoplasty on more than 300 MS patients...many of whom were Canadian born. This surgeon has also presented results of his findings in medical journals, and was being invited the world over to speak about his experience. He is a highly trained medical doctor and now a University professor in a faculty of medicine.

RECOMMENDATION: THOUROUGLY INVESTIGATE ANY CLINIC THAT REQUIRES INPATIENT STAYS.

Be particularly vigilant about any clinic (in the U.S. or abroad) that will not treat you as an outpatient. Find out why they require inpatient treatment.

MY EXPERIENCE: There was a brief in clinic stay required, but that was for my own personal safety. I hardly equate staying overnight in a foreign hospital that provides state-of-the-art care as shady. The reasons for requiring the stay were to make sure that there was no danger of thrombosis, or that there was no bleeding at the site of entry in the femoral vein. The rest of the follow-up care could be provided by my Canadian doctor.

RECOMMENDATION: DETERMINE THE COSTS.

Ask about the cost for a full course of treatment. Some alternative therapies are very expensive and most are not covered by health insurance.

MY EXPERIENCE: The total cost of treatment, MRI (MRV), appointment with ophthalmologist, Duplex Doppler scan, five night hotel stay, some meals, transportation (while at the clinic), etc, was about $ 9,500 Canadian. Travel and other expenses were on top of that. This is less than a third of what I had previously spent on MS medications in a year. This is not covered by health insurance, but the MS Society of Canada has already published a notice on how to claim the expenses on your taxes, so I`ll get a partial refund in April to offset the costs. The funny thing is here, that my refund will actually be more than the cost of doing an angioplasty (venoplasty) in Canada. Thanks Canada, for paying more for my procedure than you had to ! Great use of tax-payer dollars !

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