- Maxine David
- August 18, 2011 - 19:49
I was had the procedure on the very day in Bulgaria that Mike did, and I saw the transformation with my own eyes! It was amazing! The four of us who had the procedure that day met , and we all had improvements! It is definatey something to continue researching and improving so even more people can be helped. It is more of a risk to do nothing to help ourselves.
- Linda Rousay
- August 17, 2011 - 20:33
Mr. Duffy is not just a fluke. I have had the procedure and am a totally new person who two years ago lived in a wheelchair. No neurologist I ever went to ever told me they were certain that the auto immune theory was valid. "it appears that it "may" be an auto-immune problem is as far as they would speculate.If I lived in Canada I would still be waiting for a study rather than enjoying my second chance at a normal life.That other factors are involved is evident, yet CCSVI deserves far more credibility than Canada is prepared to allow.
- Shirley renshaw
- August 17, 2011 - 16:32
It's all good and fine that studies and research are being done by the Canadian Multiple Sclerosis Society (CMSS). They have had many decades to do these "massive" groundbreaking finds! But as they have been doing this work they have also been working very hard to disprove CCSVI. They have been wasting time, money and lives doing so. They have managed to snatch up all things that is CCSVI … such as the research (2.4 million), the National registry of who knows what (1/2 million), this survey being done by Alberta MSS (1 million), The trials that was announced by the feds end of June 2011 (God know how many millions will be used). THIS IS WRONG, WRONG. The only TRUE EXPERTS dealing with CCSVI is the Vascular Community, the and the Intervential Radiologists (FSIRs/Irs). THIS IS NOT A NEUROLOGICAL ISSUE. IT IS A VASCULAR ISSUE. MS is NOT part of these trials, research, registries and surveys. They have not been given a chance to report the TRUE information because the NEUROLOGICAL COMMUNITY decided it was their turf. If they want to do these studies etc. then give it to the proper EXPERTS. Otherwise this is once again a stall tactic to avoid the approval of a simple, minimal evasive angioplasty done thousands times a day across the world for the last 30 years. The ONLY reason for opposition from the NON EXPERTS is because the Internal Jugular Veins are involved. Well try to explain on why are thousand who receive kidney dialysis have THIS SAME (CCSVI) procedure done thousands of times as all other angioplasty? MS is a multi billion business where as CCSVI IS NOT. This does not involve BIG PHARMA …. so who is losing out and calling the shots really? THIS IS THE ONLY REASON FOR ALL OF THIS OPPOSITION. AND the only responses to any of this should NOT come from NON EXPERTS.
- August 17, 2011 - 11:05
Way to go on your treatment success...I take a different look on these so called new studies and there validity. I had the liberation treatment it has worked for me and I have no doubt there is a vascular connection...Why is there a new drug in the works that centres around the vascular part of the brain? because they have always known.I dont discount anything with new studies but I do discount ones who dont look genuine and who have the ms society backing them or neurologists because then it means something else...the ms society chose to fight the ccsvi theory right from the beginning and why? they certainly push the crab drugs and others knowing these do not work. new studies are showing the crab drugs do nothing...no meaningful 20 plus years of research were needed for that. I just wish the ppl so against ccsvi would understand this is just one treatment and they dont need to worry there heads over financial losses because we will always need a neuro..when the financial pay offs from drugs becomes more important than the patient we have a serious problem..and this goes on all over the place with all diseases...and shame on those involved.
- August 17, 2011 - 09:42
The only trials that I know of are as Lori says, diagnostic trials. There has already been trials that proves this works, but again not in Canada. If they do trials it can't be done by a Neurologist. They don't know the vascular system and it will be a study of disproval.
- Big Sleepy Mac
- August 16, 2011 - 22:53
One correction for the record, the procedure, based on the initial theory by Italian vascular specialist Dr. Paolo Zamboni, is now actually based on an internationally agreed diagnosis of CCSVI confirmed by special ultrasound or an MRI which detects blockages in at least 2 veins. It uses a fairly simple angioplasty treatment to unblock the detected obstructions in the neck veins to alleviate symptoms and improve patients quality of life. It is not a cure but it appears to be more effective than the much more expensive new drug based disease management treatments (DMTs) and with few side effects. It appears to be effective in 2 out of 3 MS patients who experience improvements ranging from dramatic to moderate. It must be noted that 1 out of 3 patients do not experience any improvements based on the standard patient tests. There are suggestions that the treatments may halt or slow MS and other progressive neurological disorders such as Parkinsons, Alzheimers, and some forms of dementia but more studies, some currently going on around the world, are required to confirm or disprove the suggestion. In the meantime, Canadian MS patients and other patients must go outside Canada for the treatment at their own expense. Way to go Michael Duffy!
- Christopher ALKENBRACK
- August 16, 2011 - 20:05
JADE – You wrote – “ There have been decades of well-founded research that demonstrates the genetic and auto-immune link. “ The research on the animal model of MS (Experimental Autoimmune Encephalomyelitis) is nothing like the human form of MS, yet all of their research and drugs are based on this faulty model. MS has NEVER been proven to be autoimmune. I`m sorry to hear that the CCSVI treatment was less than effective for your husband. I can name dozens of personal friends in Nova Scotia who have benefited from the treatment. You say that you were “anti-MS Society”. I think that it speaks volumes that Ted Warren, former chapter president resigned. I too used to be a chapter president in Atlantic Canada, and no longer support the mission of the MS Society of Canada. As for the $ 1 million for clinical trials, this was only going to be given “if and when the studies proved positive !” However, I personally believe that the flaws in these studies will prevent them from bringing forth robust data that is needed to start clinical trials. A Bristish Heart Surgeon with MS was 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.” (Dr. Gianfranco Campalani – UK Heart Surgeon) I was the 2nd Nova Scotian treated for CCSVI 15 months ago. Though not all of my symptoms have left, I have experienced a quality of life that no MS medication provided me in the last 19 years that I`ve lived with this disease.
- Bob Smith
- August 16, 2011 - 19:38
How about using a drug that expands the arteries? There was just a study in m.s. mouse model that showed Viagra was able to improve mobility. Liberation without surgery.
- Edward Murray
- August 16, 2011 - 15:25
Let's hear it for studies, including genetic ones that are finding some overlap between the MS genes and those possibly associated with venous malformations: BMC Med Genet. 2010 Apr 28;11:64. Custom CGH array profiling of copy number variations (CNVs) on chromosome 6p21.32 (HLA locus) in patients with venous malformations associated with multiple sclerosis. Ferlini A, Bovolenta M, Neri M, Gualandi F, Balboni A, Yuryev A, Salvi F, Gemmati D, Liboni A, Zamboni P. As far as I know, Ferlini hasn't issued a snarling press release claiming that her study disproves the unproven auto-immune theory of MS.
- Half Pint
- August 16, 2011 - 13:24
I go for my procedure on the 21st of next month in California!!!!!!! I just want to be able to start a normal stream of pee again OH YEAH and WALK A STRAIGHT LINE.... WISH ME LUCK EVERYONE
- Karen Copeland
- August 16, 2011 - 10:13
From MS couch bump to venoplasty to leaping from tall buildings! WTG Michael! Way to Blood(y) Flow Go! I have a dream that all Canadian MPs and Senators will see a film of this rappel, be as astounded and impressed as I am and will vote for Bill S- 204 so that all of us MSers will have the option of having this treatment and the possibility of a more normal and more productive life.
- August 16, 2011 - 09:47
Unfortunately, Mr. Duffy, it's not just one study. There have been decades of well-founded research that demonstrates the genetic and auto-immune link. I don't doubt the positive effects some (not all, including my own husband with primary progressive) have felt after treatment, but I do believe all research is valuable, not just one stream, in hopes my husband will live a better life after CCSVI treatment did not work for him. I was anti-MS Society when I first heard of CCSVI, but I have come to realize the wisdom in their stance on good, proven research. That's why they, themselves, have invested $1 million into clinical trials.
- Lori Batchelor
- August 16, 2011 - 13:08
When you say: "The provincial government has been involved in a study initiated last fall involving 40 participants, some of whom have had the liberation procedure and others who have not" I would really like to know what study is being referred to. Canada is not performing any "treatment" trials--only diagnostic studies to check for prevalence in people with MS. And wasting a lot of time, I might add--let people with MS have some hope and allow treatment of venous angioplasty now! Others with vascular conditions can be treated, why not people with MS?
- Big Slepy Mac
- August 16, 2011 - 23:04
I am very sorry that your husband was one of the approximately one third who do not experience any improvements. The question of course is why not? Unfortunately, I am not aware of any studies or theories that have tried to explain that. Certainly more studies are required to answer these and many other questions.