They' ve FINALLY responded in a "can letter" way. This is what I got tonight. What do you think? Thanks for everyone's letters/inforation, couldn't have done it without you!
Dear Jennifer:
The College of Physicians & Surgeons of BC is in receipt of your website email inquiry dated October 7, 2010.
The College is aware of this CCSVI procedure. However, in Canada there have been numerous concerns expressed by experts across the country. If research proves effective, it will then be up to the Ministry of Health to add this procedure as an insured medical benefit for BC residents. The College cannot endorse this procedure absent rigorous evidence based clinical trials and unless it shows clear benefits to patients.
Sincerely,
Brenda Kay
Inquiries Advisor
Complaints Department
College of Physicians & Surgeons of British Columbia
Sent: Thursday, October 07, 2010 9:44 AM
Subject: CCSVI in MS patients
Dear Doctors:
With respect we would ask you not to put this letter aside and read what we have to say.
It is no surprise to any MS neurologist that vascular abnormalities have been researched in Multiple Sclerosis for many years, and every time you have not taken much notice of their results, in fact many of you referred to them as "just another miracle cure", then came along a program on CTV about Dr. Zamboni's research into blocked jugular veins and his results. Although you and the MS society showed great surprise in his results, it was not a surprise to any one of you. His work and many other researchers had been working on this for years, and Dr. Zivadinov at the University of Buffalo in April 2009 had already tested and research within a clinical trial on 500 people and in February of 2010 had started research on another 500 people who has proven that CCSVI is related to MS. In January 2010 Dr. Sandy McDonald a vascular surgeon in Ontario had already sent teams over to Italy to find the protocol for the testing and the procedure he then tested 300 people and found
95% had blocked jugular veins, he then did the procedure on six people, all had amazing results. We are sure you want to argue that results were not positive and the proper research protocol was not followed, that is not why we are writing.
The results of Dr. Zamboni and Dr. McDonald had the MS community in a frenzy to get the procedure. At the same time published reports came out indicating that the four major drugs for treating MS, Avonex, Rebif, Copaxone, and Betaseron, did not do anything for slowing MS progression. There was and still has not been one word about these drugs from any of you, as these drugs are still being given to MS patients we can only believe that either patients are having a placebo effect or the drug companies or you are not aware of the recent studies.
The drug Tsaybri is still being used and many thousands of us believe this drug should never have been approved because it is so dangerous. We realize the drug companies are fighting as hard to stop research on CCSVI, as we are to have it done. The difference is the drug companies are trying to hold onto a $10 billion world market of their drugs, while all we are asking is for you all to save our lives with agreeing to the procedure for CCSVI.
You are all aware by now that CCSVI is a vascular disease, and although you all called the procedure experimental, you also knew that vascular surgeons and interventional radiologist do angioplasty procedures every day. It is a very simple, safe, inexpensive, and causes essentially no harm to the patient. The fact it is the jugular veins means the procedure and testing is done differently. Vascular surgeons and IR's do not feel this is a problem for them. Unfortunately the only people who got to speak about it were the neurologists and the MS society as the vascular surgeons and IR's had a silence ban put on them, to the point that they would have their license revoked if they spoke out.
We do not believe that the procedure for CCSVI is a cure for MS but it has been proven beyond a reasonable doubt that they are related to each other. We do support research as we as well as you and the experts need to find out why this is happening, how long it will last, why it is helping our symptoms so dramatically. We do not believe the seven research studies the MS society set up for testing only will give you or us the answers we all need. WE NEED THE PROCEDURE TO GET THE ANSWERS.
As you all know many people with MS are traveling outside Canada to get the procedure, there numbers are climbing to 4000 there is no way that 4000 people are having a placebo effect!! Many have dramatic results, some great, good and not so good. Many are selling their homes getting loans, raising money any way they can to have a chance of a better quality of life.
We ask you as doctors who took the Hippocratic oath to put the patient first and look at any new procedure or drug that will benefit the patient. We need you to think what your negative thinking is doing to us. We are sure if this was a new drug you would open your mind and try it, all around you there are MS patients finding a new life because of this procedure.
You must consider MS patients, you know first-hand what MS is doing to us, some are not affected much, but many of us are losing our ability to walk, talk, swallow, eyesight, feel, and our fatigue gets worse, and so much more. You also know the terrible side effects many of us suffer from many of the drugs we are asked to take. Many of us are having to renovate our homes for the inevitable; our family's lives are about to change forever. Many of us will end up in care homes when we can do nothing for ourselves. You as an MS doctor can stop this by being part of CCSVI. You have to help us, you have to open your minds and know that CCSVI is not going away, many of us do not have time to wait even two years, you know the procedure can be done along- side research, you can start helping us now.
Every day we know people who have had the procedure and have been given their lives back. Can you really argue with people who go into the procedure in a wheelchair and come out walking? People, who could do nothing for themselves, can now be with their families and live again. People who could not walk are running, climbing, dancing, people can feel and hold a cup of coffee again, their fatigue is so improved they stay up all day instead of having to stay in bed all day. Symptoms just disappear for many people and of course there are those that the procedure does not help or they do not have such dramatic results.
We cannot understand your attitude towards CCSVI it is helping patients, it is what you have all been working towards, it may seem sad that many of you have been looking for something that would get the results that CCSVI procedure gets. It is not our fault; you cannot blame or punish us for wanting something that may stop these life threatening symptoms. Time is against us; there is another way, just open your minds.
We need you involved, we need neurologists before and after the procedure and to work together with the vascular surgeons with follow up care.
We thank you for reading this letter and hope we have given you reason to change your minds in helping MS patients in finding a way for us to receive the procedure for CCSVI in Canada.
Attached is a paper written by Dr. Simka of Poland who has now done over 600 procedures with a 97% proof of CCSVI in MS patients. There is much more proof but we know you all know how to find it if you are interested.
Some of the Doctors helping support people with MS/CCSVI:
Dr. Sandy McDonald Ontario
Dr. Gary Siskin Albany
Dr. David Hubbard San Diego CA.
Dr. Tariq Sinan Kuwait
Dr. Mark Haacke Detroit
Dr. Paolo Zamboni Italy
Dr. Robert Zivadinov Buffalo
Dr. Ashton Embry Calgary
Dr. Mariam Simka Poland
Dr. Michael Dake Stanford CA.
From the procedure of CCSVI there is already exciting things happening, besides what the doctors are finding through the procedure. We have research on artificial arteries and veins, more sizes and shapes in angioplasty balloons and stents. We hear there are other diseases being researched with CCSVI.
Open your minds and give people with MS their lives back, be part of this exciting time for people with MS, watch many of your patients live again with their families and loved ones
EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice; Poland
June 15, 2010
To the Canadian Parliamentary Subcommittee on Neurological Diseases
I represent the center that I believe has performed the largest number of endovascular treatments for chronic cerebrospinal venous insufficiency (CCSVI) in the world. Although we only began those treatments in October 2009, we currently perform about 20 procedures per week, and total number of people who have been treated is now around 400. It is important to point out that the interventions for CCSVI in our Department have been approved by the Bioethical Committee of the Regional Silesian Board of Physicians in Katowice, Poland. Because we collect all data regarding patients' history, clinical status and the characteristics of the venous lesions that have been diagnosed, the analysis of this dataset has enabled us to draw some conclusions regarding links between CCSVI and multiple sclerosis.
First, CCSVI has been found to highly correlate with multiple sclerosis. Only 3% of the MS patients we have seen were not diagnosed with CCSVI (using color Doppler sonography, magnetic resonance venography and standard intraoperative venography).
Second, localization and severity of venous lesions have been found to significantly affect the clinical course of MS. For example, injury to the optic nerves were found more often in the cases with unilateral lesions in the internal jugular vein, while bilateral stenosis in the internal jugular veins correlated with a less frequent ocular pathology. More disabled MS patients were found to suffer from bilateral and/or severe occlusions of the internal jugular veins and the patients with stenosed azygos vein presented with the most aggressive clinical course of MS. These findings, in addition to preliminary observations that a substantial percentage of MS patients improved after endovascular interventions for CCSVI, favor the idea that surgical treatments for those venous obstacles should be an important part of the management of MS.
The most important question regarding treatments for CCSVI, however, regards the safety of such a management of venous outflow blockages. Such a management strategy is actually recommended by the Consensus Document of the International Union of Phlebology for the diagnosis and treatment of venous malformations. However, although similar endovascular procedures for the treatment of other venous pathologies are known to carry very low risk, an actual rate of complications related to such treatments for CCSVI remains undetermined, mainly because these procedures are not yet routinely performed in these cases. Moreover, recently in some neurological papers it has been claimed that surgical treatment for CCSVI can be dangerous. Interestingly, these statements were based only of the beliefs of the authors, and not on the body of evidence. Contrary to those opinions, in our clinic we have demonstrated that these procedures are safe and usually well-tolerated by the patients.
In brief, 347 CCSVI patients with associated multiple sclerosis has undergone a total of 587 endovascular procedures: 414 balloon angioplasties and 173 stent implantations were performed during 361 interventions. There were only few, rather minor and occasional complications or technical problems related to the procedures. These included: i. life threatening complications: death - 0, major hemorrhage - 0; cerebral stroke - 0; stent migration - 0; ii. major complications: early stent thrombosis - 2 (1.2%); postoperative false aneurysm in the groin - 2 (0.6%); surgical procedure (opening of femoral vein) to remove angioplastic balloon - 1 (0.3%); injury to the nerves - 0; iii. minor complications: transient cardiac arrhythmia - 2 (0.6%); minor bleeding from the groin - 2 (0.6%); minor gastrointestinal bleeding - 1 (0.3%); post procedural lymphatic cyst in the groin - 1 (0.3%); problems with the removal of angioplastic balloon or delivery system - 5 (0.9%).
Therefore, in our opinion, precise preoperative diagnostics and selective use of the stents (if balloon angioplasty was not successful) can make the endovascular management of CCSVI free of significant complications and, in terms of restoring the proper venous outflow, more efficacious than performing balloon angioplasty in all cases. However, the actual impact of the endovascular treatments for venous pathology on the clinical course of multiple sclerosis warrants more clinical studies and long term follow-ups.
By: Dr. Ashton Embry