Let's try to understand how the vascular connection to MS was dismissed, and why. It's all about EAE (experimental autoimmune encephalomyelitis) and drugs- Up until the 1930s, the prevailing thought was that MS was initiated by venous congestion. Dr. Tracy Putnam was at the center of this theory, blocking veins in dogs and creating MS-like lesions-until a new doctor found a new, SIMPLER animal model---
"In the early 1930s, Thomas Rivers and colleagues provided the first evidence that immune cells can attack the brain. Their simple experiments established what is now the most well-studied model of autoimmunity—the experimental autoimmune encephalomyelitis (EAE) model of multiple sclerosis.
Studies had shown that injection of foreign brain tissues into the brains of rabbits could cause paralysis (2). Intrigued, Rivers—then a virologist at The Rockefeller Institute—set out to duplicate these studies in monkeys. Rivers and his colleagues injected Rhesus macaques with normal brain extracts from rabbits and showed that most of the monkeys developed acute CNS disease with immune cell infiltration and demyelinating lesions. No infectious agent could be cultured from the animals, putting to rest suspicions of an infectious etiology. Rivers' group also noted that the disease-inducing capacity of the brain extracts paralleled their myelin content, providing the first hint that myelin was involved in disease induction. Thus, the experimental allergic (now “autoimmune”) encephalomyelitis (EAE) model was born. The group published these observations in three articles in the Journal of Experimental Medicine (3–5)." ++++++++++++++++++++++++++
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EAE continues to be the medical model neurologists and immunologists study today, even though this model for MS is deeply flawed. Researchers continue to give mice EAE by injecting them with antigen, and then try to "cure" them with a variety of immune blocking or modulating medicines. ++++++++++++++++++++++++++++++++++++++++++
"Experimental autoimmune encephalomyelitis (EAE) is a useful model for aiding the development of new treatments for MS. All therapies approved for MS ameliorate EAE. Two approved medications, glatiramer acetate and Natalizumab, were developed directly from studies in EAE. Several trials are ongoing in MS after success in EAE, including altered peptide ligands of myelin, DNA vaccines and statins. However, EAE has failed to predict the outcome of certai n approaches. The reasons underlying such failures are discussed here.
Many scientists interested in developing new therapies for MS criticize the EAE model for its poor record of predicting outcomes in the clinic, especially for those instances when promising therapies indicate that they are beneficial in models of EAE, yet then fail in subsequent clinical trials.
Nevertheless, the EAE models are rapid, and can quickly give indications of whether a particular mechanism of action of a specific drug has merit when taken into an in vivo model that recapitulates many aspects of the human disease, MS"
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So, the reason we still use the EAE model for MS is because it is a RAPID proof of DRUGS? Because these drugs can cure mice of EAE????
MS researchers continue to use this disease model, to the exclusion of other research, even in light of the fact that these treatments appear to cure mice of EAE...but FAIL IN CLINICAL TRIALS OF HUMANS WITH MS.
Insanity is repeating the same actions over and over again and expecting different results. We have had seventy five years of EAE research, and we are not closer to understanding MS. Perhaps we need to find a new model?
I will be heading off Wednesday to get ready for my Liberation treatment. I have the procedure at 7 am on Thursday. The last time I was scheduled for the treatment the hospitals' legal department shut down the doctor who was gointg to do the procedure 1 hour before I was to be treated. This time I am very hopeful and excited that this will be done as scheduled. I am going to post a video of me and a list of my symptoms before and the effects and results of my Liberation treatment. Of course I am hopeful that the balance, numbness, cold feet, pain everywhere all the time, vision, bladder problems, fatiuge, heat intolerance,weakness right side, brain fog will respond once the blood flow is corrected. Once I have the procedure I will post updates as to the improvements in my symptoms and condition. Also I will let others know the contact information for the Doctor who is doing my treatment, this of course will be through e-mail and not posted openly. All prayers will and are appreciated.
Wednesday, May 19, 2010
Dr. Embry responds to the Canwest editorial in Montreal Gazette-
I read your recent column on the treatment of CCSVI (Liberation or placebo effect? MS surgery, Montreal Gazette) and was very surprised at how much you left out about the science of CCSVI. You completely missed the implications of the key scientific findings of CCSVI and why these findings strongly indicate that it is important to be treated for CCSVI sooner than later.
First of all the current science has left no reasonable doubt that CCSVI is associated with MS, that is, it is far more common in persons with MS than the general population. This is based on Dr Zamboni’s research as well as published information from other centres, including a major study at the University of Buffalo. No credible researcher is disputing this clear association. Of course, association alone does not mean cause. Your statement “CCSVI, if that condition actually exists” indicates that neither of you have not read the literature (e.g. the April issue of International Angiology which had 13 contributions on CCSVI). How you think you can write an intelligent column without such background reading boggles my mind.
Another critical scientific finding which you seemingly know nothing about is that the venous malformations that drive CCSVI are almost exclusively congenital, that is, they were there at birth. Again comprehensive papers have been published on this and it is very widely accepted. This is critical because it shows that CCSVI precedes the MS disease process and is not an effect of it.
Finally, it is also well accepted that biological mechanisms which are a consequence of CCSVI, such as reflux of venous blood back to the brain, the deposition of iron in the brain, hypoperfusion, and the upregulation of adhesion molecules on the endothelium of the venules, all can be reasonably related to the MS disease process.
I would also emphasize that no one credible is claiming MS is not an autoimmune disease. The huge MS data base shows it almost assuredly is. However, it also must be emphasized that the biological mechanisms associated with CCSVI all significantly enhance the autoimmune process.
This brings us to another of your ill-conceived statements. “CCSVI, and MS, breaks down on a number of other fronts, including the fact that patients who have impaired blood flow in their veins as a result of surgeries, for example, don't develop MS. Similarly, vessels tend to narrow as we age and yet MS is not a disease of older individuals. The blocked vein theory of MS is so out of keeping with our understanding of the disease that it might be compared to fixing a burned out car radiator by changing the tires of a car.” I was embarrassed for both you when I read it. MS is an autoimmune disease which is substantially aggravated by the co-occurrence of CCSVI. Not everyone with MS has CCSVI and not everyone with venous problems has MS. This again is well established in the literature. I cringe when I read ridiculous statements which attempt to discredit the CCSVI/MS association. You two are better than the nonsense you wrote.
I might note that CCSVI helps to explain a major puzzle in MS. As you both well know, the brain is protected from the blood-borne, immune system by what is known as the blood-brain barrier (BBB); greatly strengthened, blood vessel walls which prevent the passage of immune cells into the CNS. It has always been a problem to explain why the autoimmune cells were able to cross the BBB so easily in the MS disease process, given that evolution had ensured this would not happen. Of course the trick is that the biological mechanisms associated with CCSVI degrade the integrity of the BBB and allow the autoaggressive immune cells to cross the BBB much more easily. Thus, with CCSVI as part of MS, we now have an improved, more theoretically reasonable, disease model which fits an evolutionary perspective.
Given all of the above, there can be little doubt that CCSVI is an important part of the MS disease process because 1) it is associated with MS,2) precedes MS and 3) can reasonably contribute to the actual MS pathogenesis. As an analogy, just imagine if people with persistent back pain were found to have a pin sticking in their backs. If, in most cases, it was found the pins were there before the back pain and the pain was associated with the pin, then it would be reasonable to postulate the pins were part of the problem. Of course, if the pins were shown to be there after the pain, then one would assume the pin is not a big player in the problem and may be an effect of it (a failed treatment?).
The question now becomes now that once it is established that the pins precede the back pain and can help to explain it, do we wait for 7 years of research before pulling the pins, or do we pull the pins and at the same time do research to determine how they got there, how they cause the pain, what is the safest way to remove them etc. Clearly the latter is the common sense approach. Any advocacy of the first option immediately raises the spectre of a hidden, self-serving agenda.
Exactly the same logic applies to CCSVI and MS except it is more important that treatment be done as soon as possible. This is because, in the 7-10 years needed for all the research, many people with MS will suffer serious, irreversible damage to the CNS and will experience serious clinical symptoms because of such damage. Because CCSVI is almost assuredly an important part of the MS disease process as the current science has shown, then it is important that it be resolved as soon as possible. There is no doubt that large amounts of research are needed on CCSVI but treatment of those with MS cannot wait until this research is completed.
In summary, what the media (including you) have missed is that the current science says CCSVI is very likely a key part of the MS disease process and consequently needs to be treated as soon as possible. This is not a treatment which addresses symptoms but one which addresses a main driver. I am not surprised that many people are experiencing major improvements in their MS symptoms once CCSVI is relieved. I expect those with the pin in their backs would also enjoy some relief upon pin removal. Any time you counter a key part of a medical problem, from a bacteria which causes an ulcer, to immune suppression in autoimmunity, relief is to be expected. Claims that all the impressive improvements are simply “placebo effect” are also nonsense. They are just as real as the few cases of adverse effects.
Persons with MS are simply asking for a serious pathology (impaired venous flow from the brain), which science says is very likely to be a part of their disease process, to be corrected. To an objective observer, and hopefully to the media, this should be seen as a most reasonable request.
I also hope you can understand why pharmaceutical companies and those who receive substantial financial benefits from such companies (neurological community, MS Society), all of whom have much to lose from the introduction of CCSVI as a standard treatment, are strongly opposed to making CCSVI treatment available. Who can blame them? However, given their blatant and rather large conflict of interest, their opinions on this matter have to be weighed very carefully and seen in the light of the strong subjectivity they carry. Given that you are mouthing the same hollow arguments of those opposed to CCSVI, I have to wonder “who got to you”. A drug company, your favourite neurologist or perhaps a representative from the MS Society?
I hope this helps you understand why there is so much turmoil concerning CCSVI treatment. From an objective, scientific point of view, CCSVI needs to be treated anytime it is found. From a financial point of view, various factions are strongly opposed to such treatment. I hope some day the media gets at the real stories –1) science supports CCSVI treatment as soon as possible and 2) There is a war going on with the stakes being the physical health of persons with MS versus the financial health of drug companies, neurologists and national MS societies. Which is more important to our society? I know what side you two are on and it is not something you should be proud of. Beating up on persons with MS for financial reasons is as about as ugly as it gets. You are out doing the bankers in terms of a complete disregard for the values of our society.
I hope I have given you a broader perspective on CCSVI and the importance of treating it sooner rather than later. This issue will not go away until “the right thing to do” is done.
The recent press exposure for Paolo Zamboni's research into the vascular nature of multiple sclerosis (MS) has generated an unprecedented interest by MS patients around the world. Imaging sites have been inundated with 10,000s of patients seeking answers and contacts. Each site has made an effort to answer each of you individually but this been a drain on everyone's resources. We request that you please review the information below and contact your own doctor and neurologist at this time. Although there are ultrasound and MR imaging methods available to study the body's vasculature, the ability to study this new concept in a coherent fashion will take a lot of important and careful research. Many sites are in the process of getting approval from their local institutional review board (IRB) also known as an independent ethics committee (IEC) or research ethics board (REB). These are committees that have been formally designated to approve, monitor, and review biomedical and behavioral research involving humans with the aim to protect the rights and welfare of the research subjects. The research community is doing its best to respond to this new challenge. We will try and keep everyone apprised of the current situation from whatever public information is available at this site. Please be aware that this site does not solicit volunteers for research. Finally, please be patient as the scientific approach must take its course for the benefit and protection of all concerned.
The following is an opinion based on material available in the public domain. "In the last few years, researchers have recognized the presence of increased iron content in the basal ganglia and thalamus. This in itself suggests the possibility of venous damage in MS. But the interest and association of MS with veins dates back to Putnam (1) in the 1930s (and much earlier than this as well) and then later to Fog (2) in 1964 followed by a major decade's long effort to convince people of the role of the mechanical effects of changes in venous flow by Schelling (3). However, more recent evidence by Paolo Zamboni and his team (4) suggests that MS might be caused by a chronic cerebral spinal venous insufficiency (CCSVI). It may be that changes in shear stress can cause a biological response that is very similar to what we see in MS (see for example the work by John Bergan (5)). In fact, it is a logical explanation as to why the entire brain is affected in MS, why the disease tracks backward along the venous drainage system, and why it emanates from the white matter near the ventricles in the drainage of territory of the medullary veins."
CCSVI in MS Toronto "The College of Physicians has a moral and social obligation towards all patients, including people with MS and in this sense, it should not deny them access to diagnostic tools used by recognized professionals. I suggest you find a strong case and clarify the position of the College if the moratorium is maintained for a long time because you are violating Articles 3, 4, 6 and 7 of your own code of ethics of physicians." - Alain Ouellet, former president Canadian Society of Multiple Sclerosis? Region of Quebec (1999-2006)
CCSVI in MS Toronto "If research would confirm its efficacy, this would be the first breakthrough for people suffering this debilitating disease. Until now, the only significant MS breakthroughs have been monetary ones for large pharmaceutical companies that promote their dubious treatments."
...and biggest thanks to Dr. Sandy McDonald---for using his own funds to test and study CCSVI in MS patients, for caring enough about MS patients to investigate and treat CCSVI. For being a true scientist and doctor. We are indebted to you, Dr. McDonald.
Statement of Dr. Sandy McDonald, May 11, 2010 1 STATEMENT OF DR. SANDY McDONALD before the SUBCOMMITTEE ON NEUROLOGICAL DISEASE of the STANDING COMMITTEE ON HEALTH May 11, 2010 (passages in italics not delivered orally; no footnotes delivered orally)
INTRODUCTION Madam Chair, Madam Vice-Chair, Honourable Members, We will speak today of CCSVI. CCSVI is a serious vascular problem. I am a vascular surgeon. Thank you for this opportunity to address your Subcommittee on this matter of great importance and, in my opinion, of great urgency. You have the chance to help to put an end to an enormously troubling situation in which thousands of innocent victims of Multiple Sclerosis are condemned to a slow or rapid deterioration of every aspect of their lives, and are deprived of a simple procedure available to Every single Canadian found to suffer from a venous abnormality preventing blood from draining properly from an organ, an abnormality treated perfectly easily by an angioplasty, an intravenous ballooning procedure which stretches the abnormality away, can easily get this treatment. Every single Canadian, that is, except those already diagnosed with MS. The cruel irony is that this procedure, if used to correct the abnormal cerebrospinal venous flow, appears quite clearly to help those with MS. At present, however, the diagnosis of MS precludes patients from this procedure. I am here to ask you to help remove the obstacles which make it impossible for MS sufferers to obtain treatment for Chronic Cerebrospinal Venous Insufficiency, and impossible for doctors to give that treatment even as a matter of compassion.
Statement of Dr. Sandy McDonald, May 11, 2010 2 MY PERSPECTIVE I am a cardiovascular surgeon.1 I practise in Barrie, Ontario. I also founded a company called Barrie Vascular Imaging2, which performs imaging services on referral from doctors across Canada and, indeed, around the world. I am the sole shareholder and the President of BVI.
HOW I GOT INVOLVED One day, not so long ago, BVI suddenly experienced a flood of calls for imaging to diagnose venous abnormalities sufficient to cause the brain-drainage problem CCSVI. We were receiving, and continue to receive, about a thousand calls a week. Many of these calls, are in themselves heart-rending pleas for help from utterly distraught patients, parents and spouses. I researched the matter to see what might have prompted this flood of pleas for help. I found the news about Dr. Paolo 3 and work on the diagnosis of CCSVI. At BVI, we started to do some of the imaging requested, and found that an astonishing percentage of the cases did indeed present verifiable, diagnosable abnormalities. At first, we found these abnormalities in about 75% of cases.
DIAGNOSIS OF CCSVI I realized I was uncertain about finding all the abnormalities. There are five veins principally responsible for the draining, one of which the azygos running down beside the heart is impossible to image from the outside and the other four of which, the two vertebral veins running down the back of the neck and the two jugular veins running down each side of the throat, have not been the traditional target of ultrasound imaging. Furthermore, the abnormalities can be of various kinds. Valves inside the vein, meant to keep the blood flowing the right way, can be faulty or even reversed. Veins can have tiny
(1 I am an FRCS(C) specialist in general surgery and in cardiovascular and thoracic surgery. My certifications are as follows: ARDMS Certification RPVI 2007 Recertification exam American Board of Surgery 2004 ARDMS certification RVT 1999 Recertification exam American Board of Surgery 1993 B.F.R.C.S. (C) Cardiovascular & Thoracic Surgery 1984 American Board (General Surgery) 1983 F.R.C.S. (C) General Surgery 1982 2 http://www.barrievascularimaging.com/index.htm. 3 http://jnnp.bmj.com/content/80/4/392.full. Statement of Dr. Sandy McDonald, May 11, 2010 3 internal obstructions or unusual sharp bends or narrowings which obstruct good blood flow. )
I went to Italy and met with Dr. Paolo Zamboni and he kindly gave me the training needed to detect the abnormalities and, on the basis of a rigid protocol, to diagnose CCSVI. BVI is now using Dr. Zamboni's technique and is finding abnormalities sufficient to diagnose CCSVI in upwards of 90 percent of patients referred to us with MS.4 I am now sharing these diagnostic techniques with others. I want to make it very clear. We are not finding something which is not there. We are not using imaging which lies about the obstruction. We are not overdiagnosing these obstructions. The obstructions are there. Doing this diagnosis by ultrasound presents no risk to the patient.
CCSVI AND MS It is too early to say whether CCSVI is actually causing the MS or even whether it is worsening it, or whether the angioplasty in MS patients suffering from CCSVI will predictably help them with their MS. However, it is not too early to say that the logic of such connections is very plausible and makes good scientific sense, and that the anecdotal evidence is already very compelling. The logic is this. We know that patients with MS have a build-up of iron in deep brain tissue, an area close to the draining veins.5 It is plausible that the compromised venous drainage causes red blood cells, laden with iron, to leak from the thin-walled veins into the brain tissue. As the leaked red blood cells break down, iron is deposited, an immune response follows and nerve damage develops. The anecdotal evidence is, as I say, very compelling. More and more doctors are acknowledging the correlation between CCSVI and MS6, more and more countries are acknowledging CCSVI as a formally approved diagnosis, and the experience of Dr. Paolo Zamboni and now the experience of Dr. Marian Simka in Poland, is that virtually all CCSVI sufferers with MS who undergo the corrective angioplasty experience a lessening, sometimes dramatic, of their MS symptoms.
4 I have proceeded beyond diagnosis to refer patients for angioplasty in six cases. All six have seen significant improvement; four of them have seen dramatic improvement. There have been no adverse effects. So, as I say, it is scientifically too early to conclude that there is a causal relationship between CCSVI and MS or a one-to-one relationship between the angioplasty and MS relief, but the evidence is already very promising. For your purposes here, I think things can be said this way: if indeed there is a causal relationship between diagnosable CCSVI and the MS or just the worsening of MS, refusing the angioplasty and insisting that MS sufferers stick with only the traditional treatments is insisting on treating the symptoms at huge expense rather than going after the cause at very low expense. There is no compelling reason to wait before we take the low-expense route, and there is no reason at all to force MS patients simply to put up with a diagnosed restriction in normal blood flow.
THE PROCEDURE Angioplasty is a well-known, universally practised procedure. Interventional radiologists do it virtually every day. It is very low-risk. Angioplasty is commonly used for venous obstructions (Budd-Chiari syndrome, May-Thurner syndrome, caval interruption). Dialysis patients commonly require angioplasty to repair a venous stenosis (caused by a dialysis catheter) and this can be in the jugular veins. There is nothing special about venous angioplasty. The angioplasty we speak of for jugular and azygus veins7 is a 2-3 hour out-patient visit done under local anesthesia. There is in my opinion nothing special about angioplasty8 in these veins rather than somewhere else.9
(7 The vertebral veins are too small for current angioplasty techniques. 8 Angioplasty came into general acceptance without any of the generalized trials now demanded by some before we can get on with treating CCSVI. As he wrote in his recent, May 6, 2010, The Mednews Express blog, Dr. Lorne Brandes, wrote (http://healthblog.ctv.ca/post/Treating-CCSVI-What-can-we-learn-from- coronary-angioplasty.aspx)
: ) "One would have to be forgiven, then, for suggesting that, had Dr. Zamboni made his discovery in with little or no hesitation, by the eager Gruentzig disciples of that era, and certainly without the stringent time-consuming clinical trials required in the 21st century. Am I advocating a return to the past? No. But it is certainly sobering to learn that balloon angioplasty, a highly effective, often life-saving procedure in wide use today, went through neck veins without years of further study. " 9 Some clinics outside Canada proceed not only by angioplasty but also by the positioning of a stent at the position of abnormality. Dr. Simka is reported to have done this in about 100 cases, without any reported problems. Dr. Zamboni prefers to avoid the stent and to rely on the ballooning angioplasty. So do I. See also http://healthblog.ctv.ca/post/Treating-CCSVI-What-can-we-learn-from-coronary-angioplasty.aspx.)
Statement of Dr. Sandy McDonald, May 11, 2010 5 A previous witness here, Ms Laurel Radley has told you that the angioplasty in CCSVI patients with MS has shown a 0/750 risk.
THE CATCH-22 AND THE MISERY For reasons I do not fully understand, some doctors, some hospitals, some clinics, some imaging companies have decided that MS patients ought, for no other reason than their MS, to be deprived of the angioplasty. For no other reason than their MS they will be deprived of a simple, straightforward procedure that might actually help them. As your previous witness Ms. Laurel Radley has explained and as I have seen as well, some vascular specialists or hospitals with vascular specialists have refused to take referrals of MS patients from their family doctors and insist on the referral coming from neurologists (or refuse the MS patients altogether). With the greatest of respect for neurologists, this puts the patient in a position akin to being refused the help of a plumber, for a real plumbing problem, unless the electrician permits. I am a cardiovascular surgeon. I fix blood flow. I am in that sense a plumber. When I see a plumbing problem, particularly one which deprives the whole house of good clean water, I want to fix it. When I see the whole house suffering, I want to fix the pipes. I can do that without harming the wiring in any way and do not see why we condemn the family to misery while we wait for the electrician. Just this past week, I had to tell a young patient, whose young life is being expropriated by MS, that I had found a clear obstruction in the blood flow from her brain. I had to tell her that this obstruction clearly bears responsibility for her fatigue and likely bears responsibility for other health problems, too. I could tell her that the technology exists to correct this anomaly quite easily, quite cheaply and without undue risk. But I had to tell her that the world as it is makes it impossible for that simple procedure, of a kind available to everyone else, to be offered to her.
THE DANGERS WE RUN She is not the only one. She is one of thousands. You have only to look at the blogs and MS websites to know that there are tens of thousands of MS patients in Canada who simply do not understand10 how it is possible to justify discriminating against them in this way and depriving them of the chance to find some kind of respite.
Statement of Dr. Sandy McDonald, May 11, 2010 6 They are right not to understand. You should not understand, either. Unless we put an end to this Kafkaesque and perfectly discriminatory situation, we will very predictably see, besides the misery we all know that MS sufferers and their families must endure, besides the loss of quality of life and of productivity, besides the great cost of current treatment, these dangers: a) MS sufferers will go underground to seek diagnosis of CCSVI. This will increase the risk of faulty diagnosis. b) MS sufferers will go underground for the angioplasty, or go abroad,11 to doctors whom they do not know and who are unpoliceable by Canadian medical orders and governments. c) MS sufferers will go to Canadian doctors whom they do not know and will lie about their history in order to avoid the discrimination they know they will face if they tell the truth. d) MS sufferers will launch costly class actions which will needlessly clog our courts and cost us all as a society. e) MS sufferers will sue their doctors and hospitals for refusing them treatment on the basis of spurious and in any event utterly discriminatory reasons. f) A disproportionately large percentage of MS sufferers will, in their deepening frustration and desperation, resort to suicide. In my opinion, we will also see, among the general population, a gnawing worry that government is there not to help us but to find ways to hurt us.12
THE URGENTLY NEEDED INTERIM SOLUTION Yes, more study is needed. I am happy to contribute to the study. Indeed, through BVI, I am doing diagnostic imaging which will help to establish what the correlation is between CCSVI and MS. The recently requested $10,000,000 for study13 by the MS Society is a good start but it will not help any MS sufferer in the meantime and it is fatally partial if it does not include
Statement of Dr. Sandy McDonald, May 11, 2010 7 a treatment arm for CCSVI. We will only learn the efficiency of the treatment if we actually do it. If the study is used as an excuse to do nothing while we wait for the results, 8 to 10 years, it will actually hurt MS sufferers. We cannot wait while we study. We cannot tell the MS patients just to wait. We cannot continue to disqualify MS patients from an angioplasty correction of CCSVI just because they have MS. One day, the provincial health authorities will decide that angioplasty to correct CCSVI in MS patients ought to be paid for as part of our universal health care. One day, they will realize that doing this will be spending, once, $4-5,000 to eliminate or reduce the tens of thousands of dollars spent every year on special housing, special care and enormous medication for every MS patient. Maybe we have to wait for this to become a public expense. But we cannot wait for the procedure to be given at all. We cannot tell MS patients just to wait. We must allow MS patients to obtain, and we must keep the door open for doctors to deliver, on a compassionate basis if necessary, correction of diagnosed CCSVI in MS patients.
CONCLUSION I conclude with my recommendation to this Subcommittee. If universal health care is not accessible for treating CCSVI in MS patients, then we must at the very least allow these patients to purchase these services in Canada (just as patients purchase cosmetic surgery services, bringing revenue to hospitals whose facilities are rented). These patients have a right to decide. Please report to the Standing Committee on Health and advise the Minister of Health that there are unconscionable and unacceptably discriminatory obstacles in the way of corrective angioplasty for CCSVI sufferers who happen also to be diagnosed with MS. Please find the way to make clear, at the earliest possible opportunity, that properly diagnosed CCSVI should lead to angioplasty correction without any discrimination between MS sufferers and non-MS sufferers. MS patients have just as much right to proper blood flow from their brains as anyone else. Doctors are sworn to help their patients. Please let me help mine.
This doctor is treating CCSVI, and wants people to know the TRUTH about venous angioplasty. Not the rumors or false tales told to scare people. Here is his recent post on TIMS: Note: Venous angioplasty has been around a long time. Since 1979 in this doctor's institution. This is nothing new or terribly dangerous. http://www.thisisms.com/ftopic-10680-255.html
In a generic sense, the procedure I am performing for ccsvi is angiography and angioplasty of veins. Venous angioplasty has been performed at our institutions since about 1979.; Our report (Glanz S, Gordon DH, Butt KM, Hong J, Adamsons R, Sclafani SJA: Treatment of stenotic lesions in upper extremity dialysis access fistulas by transluminal angioplasty: Four years experience. Radiology 152: 637-642, 1984) was among the first in the United States.
The most common indications are 1.the treatment of vein stenoses caused by hemodialysis catheters 2. the treatment of venous obstructions caused by cancers. 3. treatment of stenoses of jugular veins resulting from repeated dialysis catheterization and causing massive swelling of the head and face and microhemorrhages in the brain. 4. venous narrowings caused by malformations of veins, including Budd Chiari syndrome stenoses of the inferior vena cava and hepatic veins and the May Thurner syndrome, stenosis of the iliac vein.
Other types of venous malformations at our hospitals are treated by embolization and sclerotherapy.
In CCSVI (chronic cerebrospinal venous insufficiency) a malformation occurs mostly in the region of the confluens of the jugular vein and the subclavian vein. It has been shown that such veins and valves have an abnormal type of Actin. Fused valve leaflets, inverted valves, webs, septae and hypoplasia are seen. In 2009, the College of Phlebology, with representatives of more than fifty countries, voted unanimously to define this malformation.
It is often seen in patients with symptoms of multiple sclerosis, but is also seen in other patients without the diagnosis of MS. These patients have been found to have reduced cerebral blood flow and cerebral atrophy, potentially ischemic in nature, is postulated to be caused at least in part by the outflow problems.
Our procedure calls for percutaneous femoral vein catheterization under local anesthesia, followed by catheterization and angiography of the veins draining the brain and spinal cord, namely the jugular veins and the azygous veins. Occasionally catheterization of the vertebral veins is also performed. These procedures are comparable to the treatments for other venous malformations. http://www.facebook.com/?ref=home#!/note.php?note_id=380143052210&id=110796282297&ref=nf
If venous stenoses, slow flow, reflux or collateral flow through the brain and spine are identified. angioplasty of the jugular veins or azygous vein is performed after confirmation of stenosis by intravascular ultrasound. Patient recovery is short with discharge about one hour after the procedure. No sedation is necessary.
As stated above, venous angioplasty is an accepted procedure with a very low complication rate. While no complications were reported by Zamboni, they do occur when venous angioplasty is performed in other veins, including thrombosis, perforation that are minor and usually self limited, and restenosis. Restenosis may have a role in management of restenosis, although the stents were not designed for ccsvi.
Stent placement is also a component of most other venous angioplasty procedures either as an adjunct, as a primary form of overcoming elastic recall or as a secondary procedure to reverse restenosis. These have been safe. There is one anecdotal report in the lay press of a migration of a stent from the jugular vein into the heart that required operative removal; stent migration has been reported during other venous stenting procedures but these are uncomomo
Department of Angiology, Private Healthcare Institution SANA, Pszczyna, Poland. mariansimka@poczta.onet.pl
Abstract
AIM: The aim of this open-label study was to assess extracranial Doppler criteria of chronic cerebrospinal venous insufficiency in multiple sclerosis patients. METHODS: Seventy patients were assessed: 49 with relapsing-remitting, 5 with primary progressive and 16 with secondary progressive multiple sclerosis. The patients were aged 15-58 years and they suffered from multiple sclerosis for 0.5-40 years. Sonographic signs of abnormal venous outflow were detected in 64 patients (91.4%). RESULTS: We found at least two of four extracranial criteria in 63 patients (90.0%), confirming that multiple sclerosis is stronghly associated with chronic cerebrospinal venous insufficiency. Additional transcranial investigations may increase the rate of patients found positive in our survey. Reflux in internal jugular and/or vertebral veins was present in 31 cases (42.8%), stenosis of internal jugular veins in 61 cases (87.1%), not detectable flow in internal jugular and/or vertebral veins in 37 cases (52.9%) and negative difference in cross-sectional area of the internal jugular vein assessed in the supine vs. sitting position in 28 cases (40.0%). Flow abnormalities in the vertebral veins were found in 8 patients (11.4%). Pathologic structures (membranaceous or netlike septa, or inverted valves) in the junction of internal jugular vein with brachiocephalic vein were found in 41 patients (58.6%), in 15 patients (21.4%) on one side only and in 26 patients (37.1%) bilaterally. CONCLUSION: Multiple sclerosis is highly correlated with chronic cerebrospinal venous insufficiency. These abnormalities in the extracranial veins draining the central nervous system can exist in various combinations. The most common pathology in our patients was the presence of an inverted valve or another pathologic structure (like membranaceous or netlike septum) in the area of junction of the IJV with the brachiocephalic vein.
It took only two years for the discovery of Insulin to be used on diabetic patients, why will it take 5 – 10 years to research CCSVI when so many patients, who have already been treated, report improvements?I truly hope the MS Society will be investing and investigating in this ground breaking research and that vascular doctors and researchers will be supported, in the hopes of discovering if venous insufficiency is part of my MS.
