Thursday, September 16, 2010

Enjoying The Ride - CCSVI Didn't Work for this blogger

The following post is from my fellow MSer Mitch who writes a wonderful blog called Enjoying The Ride.  I re-post here with his permission for a few reasons:  

1.  I want to present a balanced view of CCSVI angioplasty and let my family and friends know that I am being realistic about my own possible results and hope they will be equally realistic.

2.  There are many success videos out there but not that many reports of unsuccessful treatments.  I encourage anyone who's had treatment for CCSVI to post their honest, true results.  People considering the procedure deserve the truth to make informed decisions.  We feel we've been lied to for years by big Pharma, doctors, et. al - let us be honest amongst ourselves.

Thank you Mitch for an honest, clear article.

CCSVI Diagnosis and Treatment Log Entry #11 – Six Month Report

IMG_0323 “The truth does not change according to our ability to stomach it.” - Flannery O'Connor
Here’s a bit of truth: CCSVI treatment didn't work for me.
I saw no improvement in my condition from the treatment I received on March 17, 2010. But that didn't surprise me. I wasn't looking for improvements in my symptoms. I was only hoping that I would stop getting worse. Now that six months have passed, I can state without reservation that my MS has continued to progress at the same slow, steady rate that is has since my diagnosis nine years ago.
This is difficult for me to report, for several reasons. First, I know that my friends and loved ones hoped that this treatment would benefit me in some way. Second, I know that the larger MS community holds its breath for good news from those of us who were among the first treated, because every success story brings hope. Third, I really thought this might work, and I am deeply disappointed that it didn’t.
So how do I feel about CCSVI, given its failure to address my disease progression? I am only one data point- a damned important one to me- but still only one data point. Dr. Gary Siskin, who has treated over 100 patients, recently commented that approximately 1/3 of his patients see a significant improvement, 1/3 of his patients see a modest improvement, and 1/3 of his patients see no improvement at all. I obviously fall into that last group.
IMG_0320 Our understanding of CCSVI is only in its infancy: how it’s related to MS, how to treat CCSVI, and how people with various types of MS react to the treatment. The complex network of veins that drain the central nervous system has never been studied from this perspective. It will take many years and many clinical trials before we develop a thorough understanding.
I remain confident that when all is said and done, CCSVI will be considered the most important discovery, ever, for the treatment of MS. And if a relatively simple procedure helps so many people, instead of pumping toxic, exorbitantly expensive drugs into our bodies day after day, year after year, so much the better.
What then, is next for me? Because there is nothing else that is at all promising for people with PPMS, and because both my mind and my gut tell me that this is a game changing idea, I still believe that CCSVI treatment is my best chance. Perhaps the impact from my treatment in March will be felt later. Perhaps, although he is an excellent physician, my doctor overlooked something during my venogram. Perhaps, as we learn more about CCSVI, new techniques will be discovered that can help people like me. I expect that I’ll undergo another venography procedure sometime in the not-too-distant future, just to make sure that we haven’t missed something.
If I turn out to be wrong, and CCSVI is a bust, I won’t lament the time I spent pursuing it for myself, or advocating it for others. It’s not like I have any better medical options to chase. The opportunity cost of my pursuit of CCSVI is nil.
IMG_0302 I plan to remain heavily involved in the CCSVI world. I must admit though, all of the positive stories that I read about online and watch on YouTube do wear on me. I know that I should feel nothing but joy for every person who benefits from CCSVI treatment, and I do. But sometimes, overlaid with this joy, is a tiny bit of resentment because I didn't benefit myself. I’m not proud of this, but I’d rather acknowledge these feelings and deal with them than deny their existence. 
Interwoven with that tiny bit of resentment, is the notion that a minority of the MS community would prefer that I remain silent about my poor outcome. They only want to hear the good news, and they fear that admissions like mine only serve to embolden the CCSVI detractors. Most MS patients, however, want people like me to relate my treatment experiences no matter the outcome, and that’s what I’ve decided to do. For a more detailed discussion of the battle between supporters and detractors of CCSVI treatment, click here.
Here’s my message to the wider MS community, and my friends who are working so hard on CCSVI issues: I am sticking with you. I am advocating for you. I am celebrating your successes. In return, please continue to listen to and acknowledge the disappointment that approximately one third of us feel when CCSVI isn't the answer.
Here’s my message to my friends and loved ones: my medical challenges are daunting, but my emotional health remains strong. I welcome and appreciate your support, whatever form it may take.
And here’s my message to myself: Keep telling the truth, and keep searching for the truth, even if it is sometimes difficult to stomach.

10 comments:

  1. The truth needs to be told for it will come out sooner or later and at least everyone has the full facts with which to make a choice; thank you for the moral clarity that most do not have and I hope that something does change in your prognosis - I really am sorry ccsvi was not your answer. My prayers are with you.

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  2. 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/

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  3. CCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
    Dr. Don Simonson, the Principal Investigator for the study agrees; “Of course there are other reasons that patients restenose, depending on the condition of their veins in the first place, and operator inexperience, so we have designed a study that isolates the aftercare protocol because we feel it may be at least as important, and in any case well worth studying.”
    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. To comply with the IRB approval, once home, patients will be examined and/or surveyed at regular intervals by a Principle Investigator (PI) for several years after the treatment to study the changes. Patients will have regular consults with the surgeon who performed their procedure as part of the protocol.
    More and more MS patients are reporting initial success (including vascular and some neurological differences) as a result of the venous angioplasty (liberation therapy) but then regression to previous symptoms sometimes within weeks post-procedure. It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons. Consequently, there is increasing concern amongst patients that the liberation therapy hypothesis needs to include a post-procedure protocol that is more refined than simply releasing the patient from the hospital or clinic within hours or a day of the procedure. If the study hypothesis is correct, it means that there are many other considerations that indicate a post-procedure stabilization period, re-examination, and re-treatment if necessary.Please log on to http://ccsviclinic.ca/?p=830 for more information.

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  4. 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.”
    Other 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. For more information visit http://ccsviclinic.ca/?p=838

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  5. “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.”
    Joanne 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.

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  6. Thanks for sharing a idea....Great post and informative
    Best CCSVI Mexico

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  7. 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

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  8. David Summers, a 37 year old MS patient from Murfreesboro, Tennessee was a score of 8.0 on the Expanded Disability Status Scale (EDSS) when he had the Combination Liberation Therapy and Stem Cell Transplantation at CCSVI Clinic in March of 2012. Having been diagnosed in 1996 he had been in a wheelchair for the past decade without any sensation below the waist or use of his legs.
    “It was late 2011 and I didn’t have much future to look forward to” says David. “My MS was getting more progressive and ravaging my body. I was diagnosed as an 8.0 on the EDSS scale; 1 being mild symptoms, 10 being death. There were many new lesions on my optic nerves, in my brain and on my spinal cord. My neurologist just told me: ‘be prepared to deteriorate’. I knew that he was telling me I didn’t have much time left, or at least not much with any quality.” David had previously sought out the liberation therapy in 2010 and had it done in a clinic in Duluth Georgia. “The Interventional Radiologist who did it told me that 50% of all MS patients who have the jugular vein-clearing therapy eventually restenose. I didn’t believe that would happen to me if I could get it done. But I have had MS for 16 years and apparently my veins were pretty twisted up”. Within 90 days, David’s veins had narrowed again, and worse, they were now blocked in even more places than before his procedure.
    “I was so happy after my original procedure in 2010. I immediately lost all of the typical symptoms of MS. The cog fog disappeared, my speech came back, the vision in my right eye improved, I was able to regulate my body temperature again, and some of the sensation in my hands came back. But as much as I wanted to believe I felt something, there was nothing below the waist. I kind of knew that I wouldn’t get anything back in my legs. There was just way too much nerve damage now”. But any improvements felt by David lasted for just a few months.
    After his relapse, David and his family were frustrated but undaunted. They had seen what opening the jugular veins could do to improve him. Because the veins had closed so quickly after his liberation procedure, they considered another clinic that advocated stent implants to keep the veins open, but upon doing their due diligence, they decided it was just too risky. They kept on searching the many CCSVI information sites that were cropping up on the Internet for something that offered more hope. Finding a suitable treatment, especially where there was no known cure for the disease was also a race against time. David was still suffering new attacks and was definitely deteriorating. Then David’s mother Janice began reading some patient blogs about a Clinic that was offering both the liberation therapy and adult autologous stem cell injections in a series of procedures during a hospital stay. “These patients were reporting a ‘full recovery’ of their neurodegenerative deficits” says Janice, “I hadn’t seen anything like that anywhere else”. She contacted CCSVI Clinic in late 2011 and after a succession of calls with the researchers and surgeons they decided in favor of the combination therapies.For more information please visit http://www.ccsviclinic.ca/?p=904

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  9. http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=player_embedded#t=0s
    http://www.youtube.com/watch?v=BfSOmij8tfk&feature=youtu.be
    While some MS patients who have had the liberation therapy are reporting long-term benefits from having the procedure, there are just as many for whom the ‘liberation therapy’ has failed as an effective therapeutic intervention. This doesn’t mean that these patients didn’t have some immediate benefits once the neck veins were opened; most did, but over time the veins restenosed again and their MS symptoms returned. In fact, having seen their MS symptoms almost totally disappear however briefly once their veins were cleared, patients who have restenosed want it done over again, as many times as necessary in some cases. However, there is now a new and growing subset of MS patients who have had vein widening venoplasty multiple times, usually to less beneficial effect each time, leading to the later discovery of so much intraluminal scar tissue by the second, third, or fourth attempt at re-opening the veins that the procedure cannot be performed again.For more information on the combination therapy protocol and study email to apply@ccsviclinic.ca or call 888-468-1554. http://www.ccsviclinic.ca/?p=1071
    http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=player_embedded#t=0s
    http://www.youtube.com/watch?v=BfSOmij8tfk&feature=youtu.be

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