After four score and more years of caregiving and living with Multiple Sclerosis it no longer surprises me when people approach us either as living encyclopedias of MS or to share MS news.
Currently it is all about Chronic Cerebrospinal Venous Insufficiency (CCSVI) and/or Liberation Treatment.
Yes hope of a new hypothesis on MS and treatment options has been loud.
Oversimplified CCSVI is about compromised blood flow in the veins draining the central nervous system. Liberation Treatment is about endovascular surgery to improve blood flow.
Paolo Zamboni, MD, Professor of Surgery, University of Ferrara , Italy
Canadian TV heralded “The Liberation Treatment: A whole new approach to MS” in Fall 2009, click to watch on line.
As for us …
“Zamboni emphasizes that the Liberation Treatment does not make people in wheelchairs walk again.”
Talk about a deal breaker!
Plus my Mother, decades ago, chose to have carotid artery surgery to restore proper blood flow. Though risk was “rare”, she suffered a massive stroke in post op. “CCSVI is an invasive procedure … risk for significant complication”.
You are your experiences.
When a wheelchair first became part of living with MS, Patti accompanied by her parents traveled to Germany for treatment. Hans Nieper, MD (1928-1998) offered an orthomolecular treatment for MS. She left the US in a wheelchair and surprised both Megan and me at the airport when she returned walking. … After spectacular early results, unfortunately in 2 years MS was again winning.
I wish for all those trying Liberation Treatment that it works.
In spite of the attention I was surprised one has to turn to medical tourism, but there it was, “CCSVI, Liberation Package … No Wait, All-Inclusive Fees in India
Hurdles belong on a track not in the way of hope.
Caregivingly Yours, Patrick Leer
It certainly makes one think....I know early on in Sharon's diagnosis, they did a couple of rounds of plasma pheresis (sp??) and she seemed to get relief from it, but of course insurance will not pay for it, since it is not a recognized treatment. I still hope and wonder what can be done for those who have had their bodies ravaged by this horrible disease. I guess we never completely give up hope, but with the advent of Obama Care coming, I really wonder what is the future for our loved ones who are already suffering so and in 24 hour care centers?
ReplyDeleteHi, I really appreciate your post. I too wish people understood that all procedures like CCVSI where invasive and unproven. I hope that the people who have taken to medical tourism have success but it only makes it more risky. Maybe I would have a different position if I was currently more disabled than I am but all the uproar over CCVSI scares me a little. It's unproven and what happens after pt.s spend all this money and do not improve or even worsen?
ReplyDeleteI'm with you Tacey, I worry that Big Medicine is always going to be the slow boat to hope.
ReplyDeletems is a life stealing disease. angioplasty does not hurt like those expensive do Nothing shit drugs. Stop all the negativity/ hurry up and get it done before it is too late...God bless dr. Zamboni...
ReplyDeletea super MS non-profit foundation that gets the money out to where it’s needed. Right now, it’s needed for treatment studies of CCSVI, a vascular condition that’s recently been linked to MS, and one that I believe will be proven to be THE underlying cause of most, if not all, cases of multiple sclerosis. Inform yourselves, please!Check this out.. http://www.ccsviclinic.ca/
ReplyDeleteI was diagnosed with MS back in 1983.Recently I came across ccsviclinic.ca. They are screening in Fargo, ND. Called (404)461-9560 and spoke to Nurse Lisa. Their Liberation Package includes pre-op video consultation with their doctors, flight costs, visas, accommodation within their hospital premises. The treatment includes stent, medications, reports & post-op followup for next 6 mths. Email:apply@ccsviclinic.ca. Getting liberated mid-November. Thankful to CCSVI Clinic for making this happen!
ReplyDeleteIt is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons in Poland and Albany, NY. As more and more people receive the therapy there is growing concern amongst patients that the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital or clinic within hours or a day of the procedure.
ReplyDeleteCCSVI Clinic Physicians have applied for an International Ethics Board study approval entitled: “PROSPECTIVE, OPEN-LABEL STUDY OF THE SAFETY, EFFICACY AND RE-STENOSIS RATES IN MS PATIENTS WITH CCSVI UNDERGOING ENDOVASCULAR TREATMENT WHO RECEIVE AN ENHANCED HOSPITAL AFTERCARE PROTOCOL. Important previous studies on non-MS patients who have had the same venous angioplasty indicate that it’s critical to position and movement control patients post-procedure, monitor them for days afterward in the hospital with various imaging techniques, and re-treat if necessary. CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. Past studies of non-MS patients with the same venous blockages have noted a cascade of failure points distally in venous vessels post angioplasty, and the hypothesis proposes that the study on MS patients will produce the same results. Once home, patients will be screened and interviewed at regular intervals by CCSVI Clinic Physician Researchers for several years after the treatment to study the changes and make comparisons between those who have followed the protocol and others who have had the procedure on an outpatient basis.
It should be mentioned that our research is under much scrutiny and attack from elements that are trying to control the industry and the dialogue. A well-organized campaign to discredit CCSVI Clinic and our research is underway in the social media. We would ask you to have the independence of thought to see through their campaign of deceit.
Regular research updates will be published on the CCSVI Clinic website http://www.ccsviclinic.ca/ . Questions about participation may be directed toward the CCSVI Clinic administration at 1-888-419-6855.
CCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
ReplyDeleteThe 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.
After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”
ReplyDeleteOther recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. www.youtube.com/watch?v=jFQr2eqm3Cg.
Dr. Avneesh Gupte, the Neurosurgeon at Noble Hospital performing the procedure has been encouraged by results in Cerebral Palsy patients as well. “We are fortunate to be able to offer the treatment because not every hospital is able to perform these types of transplants. You must have the specialized medical equipment and specially trained doctors and nurses”. With regard to MS patients, “We are cautious, but nevertheless excited by what patients are telling us. Suffice to say that the few patients who have had the therapy through us are noticing recovery of neuro deficits beyond what the venous angioplasty only should account for”.
Dr. Unmesh of Noble continues: “These are early days and certainly all evidence that the combination of liberation and stem cell therapies working together at this point is anecdotal. However I am not aware of other medical facilities in the world that offer the synthesis of both to MS patients on an approved basis and it is indeed a rare opportunity for MS patients to take advantage of a treatment that is quite possibly unique in the world”.
Autologous stem cell transplantation is a procedure by which blood-forming stem cells are removed, and later injected back into the patient. All stem cells are taken from the patient themselves and cultured for later injection. In the case of a bone marrow transplant, the HSC are typically removed from the Pelvis through a large needle that can reach into the bone. The technique is referred to as a bone marrow harvest and is performed under a general anesthesia. The incidence of patients experiencing rejection is rare due to the donor and recipient being the same individual.This remains the only approved method of the SCT therapy. For more information visit http://ccsviclinic.ca/?p=838
“Unnecessary risks are being taken by patients seeking the liberation treatment.” says Dr. Avneesh Gupte of the CCSVI Clinic. “It has been our contention since we started doing minimally invasive venous angioplasties nearly 6 years ago that discharging patients who have had neck vein surgery on an outpatient basis is contra-indicated. We have been keeping patients hospitalized for a week to 10 days as a matter of safety and monitoring them for symptoms. Nobody who has the liberation therapy gets discharged earlier than that. During that time we do daily Doppler Ultrasounds, blood work and blood pressure monitoring among other testing. This has been the safe practice standard that we have adopted and this post-procedure monitoring over 10 days is the subject of our recent study as it relates to CCSVI for MS patients.”
ReplyDeleteAlthough the venous angioplasty therapy on neck veins has been done for MS patients at CCSVI Clinic only for the last 18 months it has been performed on narrow or occluded neck veins for other reasons for many years. “Where we encounter blocked neck veins resulting in a reflux of blood to the brain, we treat it as a disease,” says Gupte. “It’s not normal pathology and we have seen improved health outcomes for patients where we have relieved the condition with minimal occurrences of re-stenosis long-term. We believe that our record of safety and success is due to our post-procedure protocol because we have had to take patients back to the OR to re-treat them in that 10-day period. Otherwise some people could have run into trouble, no question.”
Calgary MS patient Maralyn Clarke died recently after being treated for CCSVI at Synergy Health Concepts of Newport Beach, California on an outpatient basis. Synergy Health Concepts discharges patients as a rule without in-clinic provisions for follow up and aftercare. Post-procedure, Mrs. Clarke was discharged, checked into a hotel, and suffered a massive bleed in the brain only hours after the procedure. Dr. Joseph Hewett of Synergy Health recently made a cross-Canada tour promoting his clinic for safe, effective treatment of CCSVI for MS patients at public forums in major Canadian cities including Calgary. For more information Log on to http://ccsviclinic.ca/?p=866 OR Call on: +1 (404) 461-9560.
“That just couldn’t happen here, but the sooner we develop written standards and best practices for the liberation procedure and observe them in practice, the safer the MS community will be”, says Dr. Gupte. “The way it is now is just madness. Everyone seems to be taking shortcuts. We know that it is expensive to keep patients in a clinical setting over a single night much less 10 days, but it’s quite absurd to release them the same day they have the procedure. We have always believed it to be unsafe and now it has proven to be unsafe. The thing is, are Synergy Health Concepts and other clinics doing the Liberation Treatment going to be changing their aftercare methods even though they know it is unsafe to release a patient on the same day? The answer is no, even after Mrs. Clarke’s unfortunate and unnecessary death. Therefore, they are not focused on patient safety…it’s become about money only and lives are being put at risk as a result.”
ReplyDeleteJoanne Warkentin of Morden Manitoba, an MS patient who recently had both the liberation therapy and stem cell therapy at CCSVI Clinic agrees with Dr. Gupte. “Discharging patients on the same day as the procedure is ridiculous. I was in the hospital being monitored for 12 days before we flew back. People looking for a place to have the therapy must do their homework to find better options. We found CCSVI Clinic and there’s no place on earth that’s better to go for Liberation Therapy at the moment. I have given my complete medical file from CCSVI Clinic over to my Canadian physician for review.” For more information Log on to http://ccsviclinic.ca/?p=866 OR Call on: +1 (404) 461-9560.
While US courts conduct legal battles over the ethics of stem cell research and Big Pharma shuts down clinical trials citing ‘tighter budgets’, North Americans wait for solid proof of stem cell efficacy for many disease conditions. Health organizations such as the National Cancer Institute issue continual warnings about lack of proof for stem cell therapy. National media shows like CBSs’ 60 Minutes, paid for by their advertisers that include Big Pharma, perform razor-sharp hatchet jobs on those quack clinics doing fake stem cell therapy, but in the process paint every other clinic everywhere doing stem cell research and therapy with the same brush. For more detail visit http://ccsviclinic.ca/?p=882
ReplyDeleteJessica Davis, diagnosed with MS in 2003, of Somerset, UK agrees: “I have my life back thanks to CCSVI Clinic and it’s the best thing I ever did for myself. They weren’t easy to find but I did my homework.” She continues: “I had to be my own advocate for both liberation therapy and the stem cells because I got no help from my own neurologist. From the day I was diagnosed, my MS was aggressive. I didn’t have much time to take action before I would get to the point where just getting out of the flat would become impossible. I was using a cane and so tired all the time. After the 12 days at CCSVI Clinic, the first thing that cleared up was the head fog and my (incontinence) and the rest has come back over the past six months. I am working again and I consider myself cured.”
ReplyDelete“These are typical stories for all types of neuro-degenerative diseases we are treating through CCSVI Clinic. At least with MS we are seeing significant improvement in many patients and I believe this trend of outcomes will continue” says Gupte. “We have also had some significantly positive outcomes with ALS and (cerebral) palsy. With the results we have seen in the past year, I think that the promise of stem cells is coming closer to matching the reality.”For more detail visit http://ccsviclinic.ca/?p=882
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ReplyDeleteccsvi surgery
Strategic Importance of Jugular Vein Dilatation Otherwise Known as ‘Liberation Therapy’
ReplyDeleteThe Combination Therapy includes neck vein dilatation based on the findings of Zamboni, et al. The vein dilatation or venoplasty therapy provides the appropriate drainage of the CNS that prevents a retrograde pressure exertion on the myelin sheath covering the CNS. Whatever triggers the autoimmune system to turn on in people predisposed to MS, this back-pressure needs to be resolved. In case after case, the typical symptoms of MS retreat in individuals where the veins are expanded and the flow pressures are equalized. Since keeping the jugular and azygous veins fully open is the key to reducing MS symptoms, it is of paramount importance to know what other post-procedure factors create enduring effect in the venous flow. For example, there is now good clinical and observational evidence to support the fact that stem cells (transplanted intravenously at the time of the venoplasty) reduce swelling, thrombin buildup, clotting and subsequent permanent intraluminal damage leading to scar tissue. As to what has already been established through clinical trials and subsequent therapeutic practice, it has been found that even in patients with severely malformed or abnormal jugular vein structure, the intravenous introduction of autologous stromal cells (MSCs) post-operatively has served to repair injury attributable to venoplastic damage and desquamation of the endothelial and subendothelial cells of the interior venous lumen (tunica intima). Peak velocity, time average velocity vein area, and flow quantification have been assessed by means of echo color Doppler at periodic intervals post-venoplasty. Significant hemodynamic improvement has been recorded at the level of the veins in the neck post-venoplasty. Moreover, this additional stem cell transplantation therapy has led to increased luminal diameter and improved patency rates demonstrating that the introduction of stem cells post-operatively significantly modifies the hemodynamics of the jugular veins more effectively than venoplasty alone.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