Cora Ward wants to walk without the use of canes or a walker.
Six months ago, that would’ve been a tall order for the 50-year-old Point Leamington woman, who has had multiple sclerosis (MS) for the past 33 years.
But a controversial new surgery has given her new hope to combat the effects of the degenerative nerve disease.
“If I can have something like that I want it,” she said. “A lot of years I have been going like this.”
The new technique, developed by Italian researcher Dr. Paolo Zamboni, came to light in late 2009.
“It is because of prayer that I can still walk. I can still get around, but it is getting hard. If I don’t do it now I will always wonder.” - Cora Ward
His studies of chronic cerebrospinal venous insufficiency (CCSVI) determined that the symptoms of MS could be alleviated. According to the MS Society of Canada, the condition involves “a hypothetical disruption of blood flow in which the venous system is not able to efficiently move blood from the central nervous system, resulting in increased pressure in the veins of the brain and spinal cords, which in turn results in damage to these areas.”
lettre ouverte d'un opéré à un médecin en fac:
"Christopher Alkenbrack Interview with Susan Gaskin-Fusco
CBC – DAY BREAK
Friday, July 23rd, 2010
Dr. Joel Turner, from McGill University wrote :
THIS IS A COMPLETE TRANSCRIPTION OF YOUR COMMENT THAT WAS READ LIVE ON THE AIR AFTER MRS. GASKIN`S INTERVIEW
« I was listening with horror at the misinformation that you and your patient were sharing with listeners. Her comment that her foot numbness got better with this experimental vein procedure has no anatomical merit. To begin with, the jugular veins are responsible for returning blood from the brain, not providing blood to the legs. Furthermore, her statement that as long as her jugular veins were blocked that iron deposits continue to accumulate in her brain, also has no physiologic merit. I empathize with this patient, but I think she has been brainwashed into believing this experimental procedure. Any vascular problem that your patient was referring to is referring to arterial occlusions, not veins. Patients suffering from heart attack, stroke, numbness in the legs are caused by arterial blockages which is very well recognized, therefore treatable, not veins. The doctor from Collège des médecins did indeed answer your question. There is no evidence that your patient needs this follow-up duplex of her veins. She is being told that she does based on non-scientific data. Please before you bring on a patient who has heard of others getting this test, get your facts straight. You are providing a serious disservice to your listeners. »
Dr. Joel Turner
McGill Emergency Medicine Residency Program Office
Royal Victoria Hospital
RE : INTERVIEW ON CBC DAYBREAK WITH SUSAN GASKIN-FUSCO
Friday, July 23, 2010
With all do respect, I`ll be answering your opinion letter that you so confidently wrote that was read on the air of CBC radio morning in the recent interview with Mrs. Susan Gaskin-Fusco of Montreal.
I too « listened in horror » as yours was the last impression that was given to a wider public, undermining the treatment that Mrs. Gaskin Fusco received in Poland. You too, Dr. Turner, are responsible for giving misinformation to the public, as are many of the doctors and neurologists in close association with the Multiple Sclerosis Society of Canada. If the MS Society had been forthcoming and truthful with the information that they provided to the MS population, this conflict would not exist. They are the ones partially responsible for creating this canyon-like divide between the patients that they represent through the withholding of information and the misinformation that they are quoting in public forums. Though this is new territory for everyone, the MS Society of Canada, can no longer be a credible source of information as they so proudly proclaim on their website in various places.
There are enough testimonials now, from medical personnel, as to the amazing improvements that are being seen following an angioplasty on a patient with MS. Dr. Zamboni has been treating MS patients who also have Chronic Cerebrospinal Venous Insufficiency since 2006. In the beginning stages of treating MS patients, he met an Irish Heart Surgeon by the name of Dr. Gianfranco Campalani. I`m sending you links where you can find out about this surgeon, his work and what he has to say about the unblocking of blocked veins in patients with MS.
Dr. Campalani is a surgeon and a professor in the Department of Cardiac Surgery, Belfast Ireland. He has had many interesting points to make about angioplasty being performed on MS patients, as he has multiple sclerosis himself. In an interview with BBC, he provides a testimonial of what this « procedure » did for him, and how it improved his quality of life.
After having this procedure to unblock his blocked veins, Dr. Campalani states, ”Five hours after the procedure I got up and I walked the corridor without my stick.” He goes on to state further in the article, “In the subsequent days and weeks I see that other functions which were not working 100%, they work.”
Yet you state in your comment on CBC radio, that “Her (Susan Gaskin-Fusco) comment that her foot numbness got better with this experimental vein procedure has no anatomical merit. » I find it interesting that one of Britian`s leading heart surgeons explains the wonders of improved quality of life, is able to better walk, and has improvement in other areas affected by his MS, yet you so confidently state that these improvements have no anatomical merit. Do you base this on your preconceived ideas as a medical doctor ? If so, you are confidently implying that you know everything about every area of science ! Who`s right here ? You or Dr. Gianfranco Campalani, a surgeon who has performed hundreds of heart surguries in his lifetime ? The end of Dr. Campalani`s story, for your information, is that he restenosed three years later, and started to have more symptoms of MS. In fact, he had to have a second angioplasty to unblock his veins one more time, and guess what ? His MS symptoms improved ! I would challenge you to think outside the box, and admit to yourself that you and your medical team at McGill University do not have all of the answers. In fact, if you did have all of the answers, and medical research was no longer necessary, then there would no longer be medical research taking place, would there ? If we possessed all of the answers to life`s unanswered questions, then we would either close all of the research facilities worldwide, or we would be God himself !
Another story that has come to the forefront in the Canadian media is that of Steve Garvie, a man from Barrie, Ontario. Mr. Garvie underwent this simple procedure in a private clinic, and his quality of life has vastly improved. He went from living in an assisted unit in Barrie, requiring nursing aid daily, living life in a wheelchair, to walking with one cane. It is my understanding that Mr. Garvie is even able to work now. Mr. Garvie had secondary progressive MS, and now feels like he has set back his disease clock by several years. He has regained physical function not because he was on an immunomodulatory therapy for MS, but because he had a simple, « exceedingly safe » procedure performed in January of this year – a procedure that anyone else in Canada can have – unless they are branded with the MS label. Mr. Garvie made a speech to the Parliamentary Subcommittee on Neurological Disease which I encourage you to look up and listen to with interest.
Futhermore, there are doctors worldwide now looking into the links with blocked veins and how it affects the progression of Multiple Sclerosis. I do not say that « We have arrived »; I think more that the tip of the iceberg has been exposed, and that further research is needed to look into these areas and discover the links. Please see the writings of Dr. Salvatore Sclafani, Professor and Chairman of Radiology and Professor of Surgery and Emergency Medicine, State University of New York Downstate Medical Center in Brooklyn, New York.
Another paper that I found interesting, was published by Dr. Ruth Ann Marrie, Assistant Professor, Department of Internal Medicine (Neurology), University of Manitoba in a recent publication entitled “Vascular comorbidity is associated with more rapid disability progression in multiple sclerosis.
Isn`t it interesting that the MS Society of Canada and neurologists across this great country are the first to deny the possibility that CCSVI may be connected to Multiple Sclerosis, and then we have doctors, who are associated with the same organization, publishing papers on venous problems, and the fact that they actually may accelerate the disease process and cause greater levels of disability in people with Multiple Sclerosis ?
It is the narrow-minded attitude of the medical community, and the protectionism and unwillingness to work together that impedes further progress into the areas of many domains of scientific research. Rather than « beating up » on doctors who do not think like you, you try to discredit them, and this causes a greater divide in the scientific community. There is more than one way to solve a problem, and it is when we bring together the strengths that each researcher can provide that we will discover the answers to the questions that we all are so desperately seeking. Seeking control of members of your Colleges through communications that are meant to instil fear of retribution, is the equivalent of the mind-control games that we find in the behaviours of cult leaders. Why are you not allowing doctors to think for themselves ?
You also state in your opinion letter, that « Any vascular problem that your patient was referring to is referring to arterial occlusions, not veins. Patients suffering from heart attack, stroke, numbness in the legs are caused by arterial blockages which is very well recognized, therefore treatable, not veins. » It is interesting that you talk about numbness in the legs as being caused by arterial blockages. As an MS patient, I can confirm that I have had numbness in my legs, hands, trunk, etc., and I am not aware that I have arterial blockages. Almost every patient with MS that I know has had numbness – from minor to severe – and none of us have ever heard of having arterial blockages as the root cause for the MS numbness. If there is something that you know about MS numbness that we do not know about, please inform us. Maybe this is an area of research that needs to be looked into by the MS Society of Canada ?!? You stated that numbness in MS patients is treatable when dealing with arterial blockages.
Doctors from all areas of medicine, even neurologists, are coming on board with CCSVI theory. There are dozens of interventional radiologists and vascular surgeons who are starting to delve into this new area of research. They are taking the lead and looking into the links despite the « foot-dragging » of the Canadian medical community. As a human being, I can understand your hesitancy to embrace new ideas before they are proven to be correct, but to negate something before it has been disproven is just as bad. Dr. Sandy MacDonald, a vascular surgeon from Barrie, Ontario, has taken on this cause. He admits to knowing nothing about Multiple Sclerosis, but he can detect venous flow problems in patients with MS, and fix these problems. Dr. Christopher Guest, an interventional radiologist in Barrie, Ontario, says that this is an « exceedingly safe procedure ». However, the « fear » that is being instilled in doctors across this country by their respective colleges, is unprecedented. I have personally spoken with several people whose doctors fully support them in getting this treatment – but of course, these conversations are all « off the record » as we are told. Are they so controlled by their respective Colleges that they are not allowed to speak their real opinions ? Once again, this is a cult-like behaviour that one would expect in closed groups where one person or a group of persons have the ultimate control over the actions of all others.
I met a Canadian doctor in Poland on the morning of May 17th. He suffered from MS, and was in Poland for the intervention himself. Three weeks prior to that, there was a Canadian neurologist there with a family member to have the jugular and azygous veins angioplastied. I find it interesting that on one hand, the medical community is so against this, yet there are members of the same College of Physicians that seek treatment outside the confines of double-blinded clinical studies. And to be told by a doctor that « None of this will mean anything outside the confines of a double-blinded study » really does not sway people from seeking this very simple, non life-threatning procedure.
Furthermore, some medical experts believe that double-blind studies are not always necessary. Dr. Gianfranco Campalani, the Irish Heart Surgeon, has been quoted as saying, « “I believe that when a new treatment has practically only minor possible complications (as reported by Zamboni with venogram and angioplasty) and a good potential for benefits, as opposed to the pharmachological treatment rich in harmful side-effects, the need for rigorous scientific double-blind trials is nonsense. We need a few more intelligent and courageous vascular surgeons and radiologists to start treating vascular anomalies (strictures of the jugular veins) on their own merit, not mentioning MS. But the medical establishment is notorius for being conservative and generally lazy.” Yet the rhetoric that we are hearing is that this vein procedure is dangerous – simply not true.
As for the question of follow-up dopplers, the secretary of the Collège des médecins du Québec, stated that this was not necessary. In the case of Dr. Gianfranco Campalani, we learned that his veins had renarrowed, and he needed another angioplasty. Why is it that when recommendations are made from a doctor outside the province of Québec, that this is automatically deemed « non scientific » ? As a doctor yourself, the challenge with the increase of medical research is obviously keeping up-to-date on all medical advances. Your close-minded attitude, and that of the Collège des médecins du Québec, is creating a larger territorial divide between the medical community and patients. Quotes like, « This is a hoax » or the verbal abuse of which many MS patients have been victims of, have created this backlash from patients, and caused the beginning of this conflict.
Do not forget that the MS Society of Canada, and its American counterpart published warnings on their websites the Monday morning following the airing of the W5 presentation on « The Liberation Procedure ». Within a period of 12 hours, the Canadian MS Society website was updated, saying that they were opening new studies and offering grants to study the link between CCSVI and MS. The American MS Society followed suit, but only weeks later. Yet, even the eminent Canadian neurologist, Dr. Jock T. Murray, who has written several books on Multiple Sclerosis, freely admitted that they have always suspected a venous link to Multiple Sclerosis. In fact, he talks about this in his book Multiple Sclerosis : The History of a Disease. Dr. Murray suggested in a recent radio interview that they have always suspected a venous connection with MS. So is this really « out of the box » thinking, or is it a case of the medical community claiming territorial rights to ground-breaking research ?
As an MS patient myself, I can not wait, and will not wait for the medical community to battle this one out. We are not only seeing polarization with the patient-doctor community, the relationships between doctors themselves are threatened, as some embrace this new hypothesis, and others naysay it. I see from your comment to CBC, that you are in the latter community. As I hear stories of people visiting their family doctors, I am amazed at the fact that many will not take a stand for something that they believe in. Responses to the patients are based on the fear of being reprimanded by their college. Yet others are helping us « under the radar » as we seek diagnosis and treatment for CCSVI. This is the reality that we as MS patients are living.
Sincerely and respectfully submitted,
CCSVI / IVCC Group:
*Hubbard Foundation - San Diego (où les Américains se font diagnostiquer CCSVI et
"2,500 pre and post angio scan
7,500 for treatment without insurance.
Stents will be used if vein does not stay open
Stent is MRI safe, "
"we run the haacke protocol MRV, no doppler. If we find a patient positive for CCSVI we found a local hospital to do the venogram, balloon angio, and stents if balloon doesn't work. Our 4 patients have not needed stents yes, but I'm sure there will come a time. "
Kate Kellaway admires an exhibition of artworks exploring the experience of neurological damage
If you were to stumble on Brainboxes and Boundless Books at Hackney Museum in east London, the first thing that would strike you is the affinity between the artworks on display. For this dazzling, small-scale exhibition is the visual equivalent of a conversation. It has been curated by artist Shaun Caton, who runs art workshops for long-stay patients at Homerton hospital's neurological rehabilitation unit. It at one and the same time explores brain damage and seeks to transcend it. You will find almost no information about the artists themselves (patient confidentiality) – and the sense is that the art has come out of nowhere. In describing the challenges his artists were battling against, Caton lists a range of neurological conditions: Guillain-Barré syndrome, Parkinson's, strokes, brain trauma suffered in road accidents.
The show includes intimate and moving portraits as well as other ways of representing the self. Many patients have opted for making boxes which are potent metaphors for memory – receptacles filled with jewels, coral, birds, babies, a leaping dolphin. There are recycled books here too – decorated with haunting phrases (I loved the "how much longer envelope"). As I looked, it struck me that collage is the perfect art form for people suffering neurological damage because it works with the broken, reconstitutes it and makes it whole. Caton puts it like this: "The power of collage is the freedom of choice, the rebuilding of a story that may tell us something about the patients' lives. It may also reflect the fragmentary nature of their memories."
We talk also about one of the most elegant and lucid pieces on display, The Road to Recovery. The drawing of Homerton hospital looks like something out of Laurent de Brunhoff's Babar books. "It describes a maze with many ways in – but only one way out," Caton observes. But the exhibition gently disagrees. Its uplifting suggestion is that there are many ways out and through. Until 18 September, Hackney Museum, London E8"