March 19, 2010

CCSVI and the terrible temptations


Ah, CCSVI. The solution to MS, the advertising-ready "Liberation procedure", the legions of fanatic followers racing all over the planet for treatment.
Sounds suspiciously like the stem cell tourists of 6 months ago....
I really no longer know what to think about CCSVI. Initially, I thought it sounded sensible, like an explanation for the initial start of MS. Why wouldn't it be reasonable that iron deposits from stenosis led to inflammation led to MS?
But I'm a scientist at heart - degrees in epidemiology, etc. And the study by Zamboni left me scratching my head. I wanted more info. I wanted a bigger study. I wanted double blind stuff. And I wanted to see the results after more than a few months. MS, unpredictable disease that it is, can look good for a while no matter what one does, or doesn't do, about it.
And I knew from my work in health care that we just didn't have the resources here in Canada to take it on. We don't have enough trained technologists to run the MRI machines, or radiologists to analyze the results. Heavens, we don't even have the right MRI machines, or enough of them.
I met with some of the local advocates for CCSVI here, who were banging the drum for research to be done here, now, treatment to be done here, now, and the MS Society needs to be pistol whipped for not changing all research funding over to this, now.
It was unreasonable, and childish, and overwhelmingly selfish. Look, I'm not going to push someone with cancer out of the MRI tube just so I can have it. Most of my family died of cancer - and it was horrible - and I could never say that my existence, trying as it often is, is worse than what they suffered.
What stunned me was that some of these people were the same ones who were abusing the docs for not doing stem cell treatments on them, now, right now, not six months previous.
Has it occurred to any of these folks that there are others in need? Or that there are good reasons not to rush into treatment?
I suggested that advocacy regarding increasing the numbers of MRI machines and technicians and radiologists might be a good place to start, and that perhaps by partnering with the Cancer society or the ALS society or the Alzheimer's society, we might have a stronger voice.
But no. We want it all for US, only us. Sharing might mean waiting.
And then we complain about being guinea pigs.
What the hell do we want?
Occasionally, I want a cure, too. And I get tempted to cash in my savings and go for CCSVI treatment, too. But what if I do, use up all my money, and it doesn't help - I live in greater poverty....
For a webcast: MS Society: April 7th

9 comments:

Anonymous said...

I appreciate your piece. I have never flown off for any experimental treatments yet but am hoping that this one pans out in the future. In the meantime, I eagerly await more research on CCSVI and MS.

Dabble said...

It is interesting that those who seem to benefit from CCSVI also receive an intensive physiotherapy program afterwards. I wonder sometimes if it is the physio that helps the most.
My other concern is about the re-venoplasty - is it good for veins to be opened again and again? Won't that cause scarring?
So many questions, yet to answer.

Lisa Chapil said...

There is a difference between responsible reporting and what Melissa Martin chose to write about the CCSVI Clinic in this article. She was in possession of factual information and documents that put the CCSVI Clinic in a favorable light but chose to withhold the information she received from the physicains and researchers at CCSVI Clinic that would have conflicted with her agenda to smear our reputation in order to sensationalize her story. At no time did anyone from the CCSVI Clinic pressure patients into going to India for the Liberation Procedure. She should have considered that the one single person who made that claim clearly had her own agenda because she was disheartened by her 'borderline' results. We simply provide information to people about our enhanced hospital stay and aftercare program should a patient decide to have the procedure. You can't pressure someone to make an important decision about their health and all of our literature clearly states that. These MS patients are more knowledgeable about the CCSVI condition and about the options for treatment than most physicians are. To suggest that they can be pressured into a decision to have the procedure done in India is ludicrous. Patients who have signed up to be part of our open-ended study on the safety and efficacy of an enhanced aftercare protocol to reduce the rate of re-stenosis versus having the procedure on an outpatient basis (which may be contributing to long term failure of the procedure) have done so to ensure that they are getting the best care possible and because they want to be part of the important work we are doing for MS patients. http://www.ccsviclinic.ca/

Greg Mills said...

CCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
The joint application between Noble Hospital and CCSVI Clinic has been approved through the IEC Institutional Review Board (IRB) that will allow researchers to use patient data to study their new extended and enhanced aftercare treatment protocol. The study hypothesis states that in MS patients with CCSVI undergoing endovascular treatment, those receiving the enhanced hospital aftercare protocol will have an improved long-term outcome over those patients not receiving this same protocol. The study is a Prospective, Longitudinal, Cohort Study in which patients are given the enhanced hospital aftercare and post-procedure protocol and then followed at regular 3 month intervals post-procedure, with the same measurements including symptoms and clinical examination, EDSS scale, Quality of Life Scale (QOL) and Doppler U/S.
Dr. Anand Alurkar, an Interventional Radiologist has done thousands of Intra and Extra cranial angio-procedures over the past 10 years. His previous studies may indicate that it’s critical to position and movement control patients who have had a venous angioplasty post-procedure, monitor them for days afterward with various imaging techniques, for other symptoms of restenosis, and re-treat if necessary. Previously unpublished data for patients who have had venous angioplasty may support a much lower restenosis rate (< 20%) in non-MS patients with the same neck vein blockages, (while conventional liberation treatments of MS patients who undergo the procedure are treated mostly as outpatients) have a restenosis rate of over 50% (at 400 days). Currently, this means that over half of all of the MS patients who get the liberation therapy can expect to be looking to get the procedure done again within a year or so, which would not be considered a successful outcome. This may also be the biggest hurdle to overcome in getting the liberation therapy approved in North America short of clinical trials. If the positive effects of the liberation procedure disappear in many patients after only a few months, it would be reasonable to assume they are placebo unless data is collected to show otherwise. Apart from confirming restenosis rates, the study will establish whether it’s just as important to observe a strict protocol after the procedure for a period of up to 10 days to prevent restenosis. Dr. Avneesh Gupte, an Interventional Neurosurgeon involved in the study says “If our daily Doppler Ultrasounds post-procedure come up with anomalies that indicate the beginnings of restenosis in the veins, we’ll take them back and do another balloon angioplasty where the occlusion is starting to occur. It should be no different for MS patients than the non-MS patients but the key is really that they be position controlled, movement controlled, and then monitored for 10 days afterwards to be sure”.Please log on to http://ccsviclinic.ca/?p=830 for more information.

Greg Mills said...

CCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
A recent intake of Canadian patients confirmed that they were most satisfied with the protocol. “I am convinced that CCSVI Clinic has been by far the best choice available”, says Nicole Magnan, speaking on behalf of her husband, Robert who underwent the therapy under the 10-day protocol. “And nobody in this world that can convince me otherwise. Robert came in here a broken man. He had no hope. His next step was the nursing home. Today he is walking with the aid of a walker and with consistent daily physiotherapy he will make more steps every day. Most importantly, we are hoping that the positive changes will be permanent and the doctors at CCSVI Clinic explained that. They are such special people that will remain in our hearts forever.”
Regular research updates will be published on the CCSVI Clinic website. Questions may be directed toward the CCSVI Clinic administration at 1-888-419-6855 . Persons wishing to participate in the study must agree to the informed consent process, qualify through an inclusionary and exclusionary process and agree to be followed for several years by the study research team. They must be prepared to travel to Noble Hospital in Pune, India, but all arrangements will be taken care of by staff associated with the study. Interested persons should ensure that applications are in as soon as possible since there are limitations on the funding for the study population.Please log on to http://ccsviclinic.ca/?p=830 for more information.

Dabble said...

Thanks for all your comments, Greg. Very helpful.

Dabble said...

I hasten to say I do not support any of the treatments mentioned in the comments. Of course all of you must make your own decisions, but the use of stem cell transfers has only been shown effective in cases where the prior bone marrow has been eradicated through chemotherapy (the very dangerous study done by Dr.s Friedman et al). Reinjecting stem cells when the immune system is still alive and doing what it normally does has not been proven effective, nor has CCSVI.
Please wait for the studies - of if you cannot, at least do two things: 1. DO not have stent placement - this is totally unproven and dangerous and 2: avoid expensive invasive and potentially fatal interventions unless they are within the context of a carefully managed and FOLLOWED-up clinical trial.
I know this disease sucks, and it's easy to cling to hopes of the ephemeral variety - but it is a forest of wolves out there and you are taking a chance with every therapy you try (drugs or other). Everyone stands to make a buck from people with chronic disease and there are no unmitigated heroes in this fight. Buyer beware.

Dabble said...

Ah yes, Leo, but now we are wondering about the chicken and the egg. Does CCSVI result from inactivity caused by MS? (If there is such an entity as CCSVI, which has NOT been proven).
Or does MS result from "CCSVI"? Or do they just coincidentally co-exist? Association does not equal causality, and the positive results seen through the surgery seem transient and possibly placebo-induced. The thought of causing scarring in the veins is terrifying. You could be causing more, ongoing damage than you seek to relieve.
Of course, if you want MS patients to just up and die, this might be a good approach. Damaged veins through angioplasty, when there is no definitive proof that the apparent occlusion is at ALL dangerous, well, I'm horrified that these procedures are still being done.

Unknown said...

A significant world-wide population of multiple sclerosis (MS) patients have a chronic progressive neurological disease that is characterized by increasing disabilities. No treatments are currently available that slow, halt, or reverse the advancement of the disease in established cases of MS. The frustration in a growing number of patients and their readiness to pursue unproven therapies speaks to the lack of effective treatments available and is further indicative of a vast, unmet clinical need. On the basis of evidence that there is a vascular association to MS (characterized by anomalies of primary veins in the neck that restrict the normal outflow of blood from the brain to the heart), and that mesenchymal stem cells (MSCs) have a beneficial effect in acute and chronic cases of multiple sclerosis as determined in various clinical trials, we undertook the assessment of the safety, efficacy, and reproducibility of a novel approach that has vascular-protective, neuroprotective and regenerative therapeutic potential for all phases of multiple sclerosis.For more information please visit http://www.ccsviclinic.ca or you may call the toll free number at 888-468-1554 or info@ccsviclinic.com