Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Suzy Cohen author and rebel pharmacist tells us about Chronic Cerebrospinal Venous Insufficiency which is very hot topic. Seven months ago Suzy said, “There’s not a lot of discussion here in America about the CCSVI.

“Medicine,” she said, “here (in the United States) is a business.” I couldn’t agree with Suzy more but that’s a subject for another post.

Today I’d like to talk about the CCSVI treatment that is basically turning the MS world upside down. Now, in December, 2010 there are lots of people talking!

Dr. Paolo Zamboni, a vascular surgeon out of Italy reported his findings of abnormality in blood drainage from the brain and spinal cord. He explained the reason for this was often a narrowing or twisting of a neck vein which dams up the flow of blood from the brain and upper spinal cord.

This constriction of the blood vessels prevents the blood from flowing quickly enough and causes inflammation that results in damage to the brain and myelin.
Reflux of the blood stream may be responsible for the formation of iron deposits that cause inflammation and look like white spots on the brain.

Studies have been done just as Cohen said, the University of Buffalo found 56% of people with MS have CCSVI compared to 20% of controls.

The National MS Society shares in the public urgency to confirm Dr. Zamboni’s hypothesis. Some of the studies that have been done showed results that conflict with the original findings, so the Society is continuing their research.

Dr Zamboni created a treatment he calls The Liberation Treatment. This surgery widens the narrowed veins increasing the blood flow through them, thus relieving the back-pressure and eliminating the inflammation that is causing the damage to the brain and protective myelin.
Pacific Interventional has made a movie showing the treatment. You can watch the actual surgery right here.

To qualify for CCSVI surgery, you’d need a Doppler ultrasound, which is a noninvasive imaging method that uses high-frequency sound waves to view blood vessels and measure how fast blood is flowing through them.

Seven months ago when Suzy made this movie, the only places to have the surgery were in Europe.

Now we can get the Doppler ultrasound and CCSVI surgery in the United States, at Pacific Interventional Inc.

To find out where else the treatment is available check out the Liberation Treatment here.

Many people who had the surgery posted their success on YouTube. You can see their results.

As I post my MS experiences here on this blog, you’ll see that I’ve tried many treatments that work for others that are not working for me. Hearing the stories and watching the movies is exciting, maybe the CCSVI is what I need! I am going to call my neurologist tomorrow and get the ball rolling!

Are you familiar with the Liberation Treatment? Tell me what you think of it!

Linda

About our Co-Founder: With a bachelors in Social Work, Linda is 53 years old, happily married with eight children and 17 grandchildren. Diagnosed with MS in 1995 and now having accepted and truly embraced her new reality, Linda has created MSrelief.com. She is dedicated to proving that joy can be chosen while living with Multiple Sclerosis. Linda specializes in helping others, especially those with MS attain the lifestyle, independence and happiness amid living with MS.

51 Comments:

  1. people that have CCSVI should get it treated…but it should not be linked to MS. I am amazed at how many in US are paying for an unapproved treatment which is unethical for doctors to perform and how many doctors are committing insurance fraud. Until this approved the treatment should be FREE, Everyone talks about how big Pharma will lose money….you are just taking that money and lining these clinics pockets. It sickens me to see this. IFFF MS causes people to CCSVI – lets prove it in Clinical Trials… doctors are jumping on bandwagon to make an extra buck.

    • Heather,
      I’m glad you expressed your opinion! I haven’t heard this before, I’ve only heard people looking for hope and seeing results. People struck with this dreaded disease are looking for someone to blame. It’s really sad.

      My Neurologist and my alternative Doctor don’t see the benefit, one of them said, “I can’t get my brain around it.” the other one said, “Untill the research is done, I won’t buy it.”

      The MS Society is researching CCSVI as we speak. Last I heard MS Societies in the U.S. and Canadfa have launched seven new studies to investigate CCSVI and its possible role in the disease process. I haven’t heard where the study is right now.

      I agree about the $ – business is business and the medical profession (including pharmaceuticals) is a business.
      I look forward to visiting with you more!
      Linda

  2. The videos that are on you tube are just anecdotal evidence. There’s no way to prove that these people are actually patients who had this procedure. If you look at some of these “medical tourism” sits, you’ll find the same kinds of videos. Patients are talking about how great the medical tourism agency was and how the procedure helped them. It seems like a scam to get desperate people to spend their money.

    Studies are still being done to establish the relationship between CCSVI and MS. However, whenever a study proves that there is no relation, Dr. Zamboni and others come out and say that this study was done incorrectly. because it didn’t follow Zamboni’s protocol. This is a protocol that changes with the day of the week, to suit his needs.

    For anyone wanting to get this procedure done, please either get involved in a study or wait until all of the findings come in. Don’t spend your hard earned money to go overseas, or even to an unscrupulous clinic here in the US and have an unproven procedure that could be dangerous.

    • Elyse,
      I thank you very much for your comment. I was sucked into the media, the hope and excitement just like others are. I’m doing well enough that I didn’t look seriously into having the procedure done, but a friend of a friend of mine did. I’m going to check in with him today and see how he’s doing.

    • I know have several Canadian friends who have had the procedure performed by Dr. Salvatore Sclafani in NYC. How can you say a doctor with 4 decades of experience is “unscrupulous ?” He was head of interventional radiology at Suny in Brooklyn, the largest training center and one of the largest employers in Brooklyn. Furthermore, all procedures must be evaluated on a risk-benefit ratio. I did this evaluation with my family BEFORE taking chemotherapy that damaged my heart….and this was to stop MS progression. I also made a clear decision for myself about angioplasty, and the entire procedure took less than 45 minutes, I was wide awake, and I`ve had benefits from it for almost 11 months now. No MS medication helped me like this. As for the “desperate” comment, I was truly desperate when I saw myself going down hill quickly, and decided to take chemotherapy for my MS. I was hopeful when I had venoplasty and had inverted valves in my jugular vein corrected safely and painlessly ! In 4 years my medication cost $ 113,000, and did not stop the progression of my disease. Angioplasty cost me about $ 3,500 euros plus travel expenses….something I would pay again to have another year with relief from this disease.

      • You mean the Dr. Salvatore Sclafani @ Suny Downstate who recently had a. NY Times article written about him over radiating babies, and possibly causing them cancer in the future?
        Chris,
        3500 euro converted to the US dollar is approx $8,000. So good for you that you get a healthy discount of$ 2000 off of the sx. The docs in Tijuana have a early bird special of $9500. Book your re stenosis tx soon, and good luck with quack docs.

  3. Heather,
    Why are you on such a whitch hunt on CCSVI? You have barely had MS a full year so you have no clue how bad it truly is for some people yet you have appointed yourselg the judge on what is tied to MS. It really sounds like you got tested for CCSVI and told you could not get the treatment maybe for other reasons? Either way this witch hunt is so stupid because people are getting treatment and it is covered by insurance. You keep jabbing that DMD in your body and I’ll go back to living a very active life thanks to liberation

    • Seriously You are making the assumption that Heather has ONLY had MS for One Year, but You are clearly misinformed because if You knew a Thing about MS and the people that have it, You would know that Most people Have MS for MANY Years before they are Officially Diagnosed with it! How DARE You even hint that She or the Rest of Us are on a “Witch Hunt”, or demean ANY of Us who have been suffering with this Disease for MANY years! CCSVI “Liberation Treatment” is a CON and is NOT FDA Approved for the Treatment of MS for a Reason! It’s Garbage! So Yes, Heather and Myself and those of Us with common Sense will continue to “Jab” Ourselves with DMD’s before We would ever consider committing Insurance Fraud just to make some Unscrupulous Quack Rich!!!

      • If CCSVI is “garbage” as you say, why is the MS Society throwing $ 2.4 million into the research ? Why are doctors looking into it ? Why are doctors like the Cardiac surgeon Dr. Gianfranco Campalani in Ireland, Dr. Bill Code from Canada, and others promoting it and actually having it done ? It`s not fraud if you pay for it yourself. Why such hostility towards people wanting to improve their quality of life ?

        • Chris,
          They threw 2.4 million to quiet the masses. And soon the hypothesis of a link between CCSVI & MS will be GONE!

  4. Sorry about that but there is a group of people who are doing everything in their power to discredit all things CCSVI. For me it is simple to wrap my head around. If you have a clogged vein then your blood flow is restricted. The simple angioplasty opens up the vein so it flows properly. If a person without MS went to their doctor with cold feet, tingling they would be sent to a vascular guy who would in turn do angioplasty in those places blocked. For me Tysarbi almost killed me while with angio it gave me my life back. My cog-fog came with Tysarbi and left with angio

  5. Oh Dear God she’s here too!
    Venoplasty is NOT COVERED with a diagnosis of MS.. the cpt codes used to bill to the insurance companies for CCSVI for MS patienst are being FRAUDENTLY billed. The codes being used are those used for vercoise veins. I actually have the codes as PROOF.
    FYI kellye had her tx done in Mexico outside of a clinical trial. Her friend had her tx done and defrauded the US military by having it billed fraudently)
    Zambonis patent for his latest Dr. Frankenstein doppler machine is being financed by a Italian company which also own to HUGE pharmaceutical companies. So if you truly believe that Zamboni isn’t reaping the beneifts of big pharma, maybe your cogfog hasn’t been helped by your treatment Kellye. Go get checked to see if the immientent failure of re stenosis has begun on you, honestly in my opinion it never left with you…
    Keep in mind Zamboni stresses remaining on a DMD after the tx. His wife remains on Copaxone to this date. Zamboni also states NOT to have the tx outside of a clinical trial.
    There are those of us smart enough to know CCSVI has NOTHING to do with MS.. we are SMART enough not too be roped into a medical tourism scam, and we are SMART enough not to be roped into thinking this is a cure. Its a band aid, and I want a cure!

  6. Kellye,
    Don’t you DARE compare your MS to anyone else’s. Heather may have just had one yr under her belt she is far more knowldegable than you.
    Oh wait didn’t one of your other “friends” have MS less than a yr she REFUSED any medications and went straight to her tx. Now her mug is the poster child all over youtube for your cause! Can we say patient advocates getting paid to recruit, oh and we have proof of that as well..
    So you opened this door wide open and I am walking through… so hold on its going to be a bumpy ride!

  7. Linda,
    I apologize that my response has triggered a response by one of the most hateful people currently on facebook. I was treated in Cabo in Aug and got so much of my life back from so many symptoms with the cog-fog doped feeling I had since Tysarbi. While i was down there I met a dozen other amazing people with MS who were treated. I saw a woman with PPMS pick-up a glass on her own for the 1st time in three years. She is 30 yrs old. Her young husband was in tears over such a small improvement. I am 7 1/2 months out from treatment and I hiked 3 miles in the mountains today then cleaned my home and finally fixed dinner. I would do it all over in a heartbeat. Trials are happening now and insurance is covering it legally as it is cheaper than drugs.
    Please keep an open mind on this as it is the only thing out there giving hope to so many with MS of all types.

    • Kellye,
      Show me your facts! Where is your proof? CCSVI is NOT LINKED to MS! There are a least 7 research papers stating the venoplasty/angioplasty is NOT beneficial for MS patients. The point being you have not on stictch of SCEINTIFIC proof this procedure works and is or beneficial!
      Insurance is NOT COVERING it legally! It is an experimental treatment therefore can not be billed legitimately for MS…show me proof of that as well, oh that’s right you have none.
      Example Copaxone roughly costs $3000 a month (which insurance pays for and Teva offers financial assistance with those who have a copy) 3,000 x 12 =36,000 per yr.
      “Liberation tx” sx alone $10,000, add into that, hotel, airfare and incidentals on the low side an additional 5,000. So $15,000 for ONE tx. It seems re stenosis of the veins is common and therefore additional txs necessary. Those who have had the tx some needed to be txd 3xs in one yr! That’s $45,000. Now keeping with protcol of Zamboni to remain on a DMD and using Copaxone in my $36,000 on top of the $45,000 thats $81,000 for ONE YEAR.. so Kellye do your math more closely.
      I have an interesting question, Kellye are you on SSDI? If you are and can hike 3miles, cook and clean etc, you have no reason to remain on SSDI, you can work! So if your on SSDI it would only be right of you to have it revoked and get back into the workforce. Its a miracle Kellye is cured!

  8. How is insurance covering legally? I do medical billing and coding for a living, and none of the codes people have used say anything about this being a treatment for MS. The treatment codes they are using are for other blocked veins and arteries, but they say nothing about the veins in the neck. It’s insurance fraud when you bill for an unapproved procedure and just call it something else, which is what they seem to be doing. The insurance companies are paying for a procedure that they don’t even know exists, because it is not in any of the coding books.

    If insurance was covering it legally, why would it be necessary to go out of the country for it?

    They seem to just be piecing this procedure together as they go. They’re using stents that are meant for arteries, not for veins. And whenever a study comes out against CCSVI being related to MS, Zamboni and colleagues say that it’s only because the Zamboni protocol wasn’t followed, but that protocol has not been clearly established. Zamboni says that he is the only one qualified to train doctors to do the scanning and the procedures, and that only the machines that HE has invented should be used. He is patenting his machines and selling them for a buck. Doctors all over the world are setting up these “clinics” and using Medical Tourism agencies to make money. This screams SCAM!! Even if there is some sort of a link with CCSVI and MS, it is unethical and unscrupulous to charge patients for unproven procedures. But then, if it was proven insurance would pay for it LEGALLY and nobody would have to shell out thousands of dollars out of their own wallets. These doctors are just lining their pockets.

    And you know, if it ever does get approved for what it really is and not just what they choose to bill it as, insurance companies are NOT going to pay the exorbitant fees that patients are paying for it now. The doctors will surely lose money if insurance starts paying for this procedure.

  9. Given that there are many circulatory symptoms which fall under the umbrella of MS symptoms, there has to be some sort of vascular disturbance. I have never met a neurologist who had an explanation for cold, blue extremities, heat intolerance, or spasticity. They “don’t know”. If anyone here can please explain to me how a lesion can cause these symptoms, I would surely appreciate it.

  10. Goodness, ladies! This is getting out of control! MS is truly a dreaded disease and it’s different for everyone!!! We are all on our own journey, doing the best we can! We need to build each other up as we take one step at a time!

    • Linda,
      Honestly, I am a outspoken and passisionate person for that I am no sorry or apologize. I will say I am sorry that the pro ccsvi ppl can’t let sleeping dogs lie. Your article is well thought out and well intended which I appreciate. As you know this is a hot topic which is dividing the MS community. If you notice certain ppl who advocate for the tx can’t prove one thing to any of us . Its all arbitrary rhetoric and biased opinions because they’ve had it done, outside of clinical trials and have NOT followed protocol.
      They fail to understand the burden of proof lays on their shoulders since the hypothesis has been brought to light. They can’t prove anything because no scientific evidence exisits! No double blind controlled study etc…
      All they have are docs like Zamboni and his co horts on the take, trying to patent a Dr. Frankenstein doppler machine being funded by a big pharma owned company, no controlled study that replicates Zambonis findings, ancedotoal youtube videos (by ppl who most likley don’t have MS) patient advocates “recruiting” new members for profit, medical tourism scams, unscrupulous quacks performing an experimental tx for money (which even Zamboni says is unethical)and the list goes on and on. Then of course the lovely thoughts of us on here using the word “witch hunt” “jab ourselves with DMDS” etc etc…
      Again no proof! I have tons of proof to the contrary…

      • Sharon,
        I am very impressed by your passion and knowledge! I appreciate your opinion, and I’m glad you’re sharing it. I’m very curious how you all found this post! I have only been up and running for a couple months and I am waiting to get more information here before I formally launch. How did you find me?
        Linda

        • Hello Linda,
          This link was brought to a open forum webpage as stated by Heather. Kellye has a vendetta against us because we have information that could could potentially stop cash flow for her.
          Notice she has yet to provide ONE SCIENTIFIC double blinded controlled study linking CCSVI to MS. She can’t provide it because it doesn’t exsist! We are all extremely knowlegdable men & women, well versed in MS , science, medicine etc.
          Kellye can play the “poor me role” really well. Trust me her apology has no validiaty that she posted to you…
          I will never apologize for being a strong willed, intelligent women, nor will I apologize for my passion. If ppl like Kellye cower that easily , you know they are not strong enough to maintain their own opinions.
          She won’t disclose her information about her MS but she had the treatment? Oh that makes tons of sense.
          Let’s review the verbage used by Kellye, “Witchhunt’,” jab ourselves with DMDS,” dares to make less of another MS patients situation…. openly lies about the experimental hypothesis being paid for by insurance.
          Its quite comical to believe Kellye sees herself as an authority when she has NOTHING to back it up..

          • Read the comment to the referenced story in the comments section:

            Margo was my sister-in-law and I am surprised that an article written by the CBC was so short on insight and lacked pertinent accurate information regarding her recent death. The article insinuates that the “liberation treatment” was not successful and therefore led to her death. This was not the case as we saw immediate and some significant improvements following the treatment. Her death was due to complications secondary to MS and not in any way related to the treatment she received outside of Canada. She died as she lived, a “champion” dedicated to find a cure/relief for this dreadful disease.

          • I’m sorry your sister in law passed away, Chris. That being said she knew the risk she was taking. If it was her choice to put her body through all of that I do feel for her, but personally I would never had taken such a chance.

          • “Her death was due to complications secondary to MS and not in any way related to the treatment she received outside of Canada.”

            Don`t put blame where no blame is due !

  11. Linda,
    I can tell you how this post was found as Heather posted a link to her comment on their hate group wall and that is why I commented like I did at first. I only speak for myself and I will not pay any attention to the one spewing rage here it is not passion. She took a direct shot at my MS cognitive issues. I have had her blocked on facebook since last year and she runs a group that call themselves the MS Mafia out to discredit all things CCSVI. I do hope you stay on top of what is happening out there with this as so many people have had amazing results. I know at least two people who would have been dead still in hospice if it were not for the treatment. I am not going to go into my history but I will say it relieved my symptoms enough to not need a daily caregiver. Hopefully that will not be thrown back in my face this time. Check out CCSVI.org for the latest news last week out of Chicago.
    Cheers

    • Kellye,
      Why don’t you join me on fb.com/msrelief.com or request my friendship at fb.com/lindagracecox? I’d love to hear your story in detail!!

      • Linda,
        I would be happy to share my story with you and have sent you a friend request on fb. My only motive is and always have been to share my experience about the treatment and the amazing results that I had. I just would like to do it without being attacked by this gang of people. I do not let others bully me

  12. Hi Linda

    Sorry I havent responded to you email. This link was posted by someone else on Facebook…. I did link it to an OPEN group on facebook that everyone can access as Kellye and her cohorts have ruined the NMSS page, so i refuse to go there. She is alway commenting on EVERYTHING i post publically….think she is a little obsessed over me. I look forward you expanding your blog…as Sharon said this article was well thought out… I was just stating my opinion…but I guess Kellye had to namecall, so i am doing it now too. As you have read above we have yet to see proof of the linkage… IF you have CCSVI you should get it treated but not all MS patients have it. Oh and my nuero is a Vascular Neuro by trade who specializes now in MS. Funny how he has been talking to those in Buffalo about CCSVI and they are embarassed to talk about it. He is talking to them because I keep pushing the subject… I just want to make sure. Kellye I am happy you got you CCSVI treated and it has done well for you. I would love to know to if you are no longer collecting SSDI and have rejoined the workforce.

    Linda I hope you take everything that has been shared to form your opinion… just consider the ethics of doctors who perform experimental procedures, charge for them and commit insurance fraud. And to note… there are many on Facebook that are Patient Advocates…they are PAID to recruit people.. one of the biggest advocates came clean and exposed it

  13. oh and the group MS Mafia – there is and never was such a group…why are you making stuff up about us.

  14. To me, it all just seems a little too good to be true. Dr. Zamboni is a Vascular surgeon, and so what do you know? Seemingly overnight he came up with a vascular cause for MS, when others have been researching this disease for years and not found it to be related to any vascular conditions. Then as if he is an expert in this supposed CCSVI (which may or may not really exist), he came out with his own protocol and his own machines for testing and treating. Any other medical procedure gets researched for years and strict protocols and safety guidelines are developed before it is offered to the general public. But not CCSVI treatment. For some reason it is exempt from that. This is ONE doctor who has come up with his own protocol and his own machines. He gets paid for teaching his methods (which have not been validated by any study yet) and he gets paid for selling his machines which he invented solely for this purpose.

    There are clinics popping up all over the world whose sole purpose is to test for and treat CCSVI using the Zamboni protocol, which he obviously gets paid to teach them, and using his machines which they have to purchase. Who here really wants to go to Romania or Mexico for medical treatment?

    • Elyse,

      It has been susptected for the last 150+ years that there is a vascular connection to MS. Please read the studies done by the French neurologist J.M. Charcot who defined MS by doing autopsies on people who had died with MS. The lesions found in the brains of MS patients near each plaque are venocentric.

      Zamboni`s theory is not even a new one; he has revived a hypothesis that has been around for over a century. In fact the autoimmune theory is relatively new….it started in the 1940s and continued over time.

      If the autoimmune theory were universally accepted, why would the National MS use the weak wording of “MS is thought to be an autoimmune disease”. Thought ????? Read ALL of the literature that accompanies the medications for MS : Copaxone, Rebif, Avonnex, Beteseron, Tysabri, Gilenya. I challenge you to find one med that says definitavely how it actually works. In fact, don`t waste your time, I`ve done it, and it doesn`t exist.

      Also, if you are American, there is no need to travel overseas if you feel you want treatment for CCSVI. There are clinics now in almost every U.S. State.

      I was tested in Canada….and my insurance company paid for it. Then I went for treatment overseas….but I had to pay for that part. Never regretted it for a second. In fact, the health care that I received overseas was far better than any that I`ve received in any of the four Canadian provinces where I have lived. Strange that you would put down other countries without actually knowing their system ! I used to do that too, until I travelled beyond the borders of my country – which by the way prides itself on excellent health care. 🙂

      • Chris your insurance company paid for your treatment and knew exactly what they were paying for? I’m just curious, because there is no insurance company here in the US that will pay for an experimental treatment. Reason being: there is no way to legally bill them for a procedure that does not yet have a diagnosis code or a procedure code. Using “similar” codes, or billing for a “similar” procedure constitutes insurance fraud.

        I’m not putting down these other countries, just the doctors that are charging for experimental treatments. =)

        • Elyse,

          That`s not what I said. Please read carefully. I stated that my insurance company paid for the DIAGNOSIS. I paid for the TREATMENT. Read what I say as this was very clear from my original message.

          Canadian insurance companies (private and publically funded) pay for all kinds of medications use for “off label” purposes, as Linda has stated above. As long as a medical practitioner prescribes it, most companies will pay. When I took mitoxantrone (chemo) for MS, it was not yet a recommended treatment for MS, yet it was covered, even though I was never in a clinical trial !

          I find the resistance to improved health a little overwhelming. Should I sit back down in my wheelchair, and give up my licence that I was able to get back following the venoplasty. Please be real. Though this was “experimental”, why should I be held hostage by a medical system that doesn`t believe this ? A number of doctors all over the world are seeking the treatment for THEMSELVES, as they know the risks of venoplasty, and are more than willing to take those risks themselves.

        • Sharon, I figured it was so when I wrote that rebuttal to your comment. I guess I’m just frustrated that you guys are bantering here on this site, and I’m letting you! So please, let’s quit chatting on this site, move to http://fb.com/relief.com (Multiple Sclerosis – Relief on facebook) and give my page some attention!

  15. I was diagnosed with Relapsing remitting M.S. at the age of 24. When I look back over my medical history, there were probably more signs of MS before that time, but they all converged at one point in time, and I was quickly diagnosed by Dr. G. Francis, director of the Montreal Neurological Institute. I continued working for a number of years as a teacher and then for the last 6 years as Principal in the Québec School System.

    That was almost 19 years ago, and I have researched this disease for the last 15 years reading conflicting medical reports and studies from around the world in different languages. I am a linguist, so I speak French and English fluently and have a good reading knowledge of a few other languages. I have read many medical texts on neurology and multiple sclerosis, and have always been intrigued that so little was known about the disease.

    One of the most interesting books that I`ve read on Multiple Sclerosis was written by the world-renowned neurologist from Nova Scotia, Canada, Dr. Jock T. Murray, entitled “Multiple Sclerosis: The History of a disease”. It was in reading this book several years ago that I learned that the vascular connection to MS has always been in the background, and theorized as a possibility of a trigger for MS. The vascular theory has appeared over and over as a possibility during the course of understanding the MS disease process. Though other areas of involvement in MS were obvious (environmental influence, genetics, immunological influence), the vascular theory has always been there in the background.

    After studying the many conflicting articles published on MS, it became obvious that the autoimmune theory, the most prevalent theory by modern-day researchers, took the stage. The last half of a century has lead to little more knowledge on M.S. Not one neurologist the world over will state that M.S. is entirely an autoimmune disease. The pharmaceutical industry that has invested billions of dollars in research has also never dared to say in any of their research or any of the documents that accompany the medications that MS is an autoimmune disease. Rather we find statements to the effect: “It is believed that (NAME OF MEDICATION) is thought to…”. The MS Societies also never claim overtly that MS is an autoimmune disease. In fact the National MS Society states on their website on the origins of MS that “MS is thought to be an autoimmune disease”. “Thought” ???? That`s a far cry from a proven theory on MS. If MS is only “thought” to be an autoimmune disease, one has to question why ALL of the medications used to treat MS focus on treating it as an autoimmune disease.

    Another question that I have always had that has never been answered conclusively is “How do we know that the immunomudulatory medications (DMDs) work if each person`s MS follows a different course ?” How can one state conclusively that medication is actually working, or if it is the normal remission of the disease in the early or less progressive stages ? I have always found it strange when people say, “I know that my medication is working because I have diminished symptoms !” In reality, the medications do not work on symptoms but rather is “supposed” to slow the progression of the disease. And how does one know that the disease has actually slowed down because of the medications or if it is simply a spontaneous remission. Of course these measures would be far less subjective in the progressive forms of the disease, but strangely there are no medications that have been proven effective for the progressive forms of MS. If immunomodulatory medications are effective, then why have none yet been developed for primary progressive or progressive relapsing MS ? I would have no problem adhering to the immunomodulatory theory if indeed the medications were proven to be effective for progressive forms; but since they are only for relapsing remitting MS patients, I have strong suspicion that the medications do not actually work as well as many say that they do.

    After a decade of living with Relapsing Remitting MS, and taking two of the four injectable medications, my disease progressed into the more debilitating form of Secondary Progressive MS. This is when there was a slowing down of the number of clinical relapses or exacerbations, and the disability started to accumulate at a faster pace. As of 2003, I was forced to leave my full-time employment, as I watched my health decline slowly over time. I was walking permanently at that time with two fore-arm crutches, as I needed bilateral support due to right-side weakness and serious lack of balance. I also suffered a number of other symptoms such as fatigue, pain, spasticity, visual disturbances, bladder dysfunction, and the list goes on. After starting a course of chemotherapy to suppress my immune system from attacking itself, I only found myself sicker and more disabled, but now with a decline in heart function as I experienced mild cardiotoxicity caused by the chemotherapy medication. My neurologist told me at that time that I only had a few years left before I would be in a wheelchair permanently, and that I probably would only be able to stop progression for a couple of years before an imminent decline.

    It was in the fall of 2009 after the airing of W5s presentation on Zamboni`s hypothesis of MS having a vascular component that I became interested in this theory. In fact, it wasn`t a big leap, but a major change in paradigm, as the autoimmune theory dominated all facets of MS research. I too felt this was just too simple, but thought that I would look into it more. In December of 2009, I travelled 1500 km to Montreal, Canada, where I was told at a private clinic that I had blood-flow problems in the drainage veins in my neck. It was at that time that I discussed the issue with my spouse and children, and that I decided to undergo treatment for this condition, which has now been coined CCSVI or Chronic Cerebrospinal Venous Insufficiency. After being treated in May of 2010, I had improvements in my balance, fatigue, inability to concentrate, walking, urinary dysfunction. Many, but not all of these improvements , have persisted. I often say that my MS digressed by 5-7 years, which has lead to a much improved quality of life for me and my family. I can now drive, something that I could not do for months before the procedure. Furthermore, I have stopped almost all medication for MS symptom management.

    Upon returning from overseas where I had to go for treatment, I have been followed by my family doctor for the last number of months. She has documented my improvements, but also has cautioned me that they may not last. However, she has stated very clearly that these improvements are definitely not a placebo reaction. I do not understand why restoring proper drainage from the brain can alleviate certain symptoms that are associated with MS. I think that many more years of research are necessary. However, setting back my disease progression, and gaining a few years back with my wife and my two teens, has only encouraged me to hope that the link between MS and CCSVI be made known more quickly.

    Treatment for CCSVI is definitely not a cure for MS, as I still have some symptoms. I find it curious how neurologists seem to want to downplay the improved quality of life that some people are experiencing. I`ve always believed that doctors were hopeful of improving their patients’ quality of life. I had a procedure that lasted less than 45 minutes and was virtually painless. I did not have a stent, for which I am thankful. I have had my veins checked again since the procedure, and the flow of blood is still fine. If I had been less affected by MS, I may have waited for the science to catch up to the practice, but at the stage of the disease I was at, I decided that I did not want to wait and see further decline in my health if I could prevent this from happening. I made an informed decision for me. As with all health issues, I think each person has to weigh the risk-benefit ratio for themselves. I did, and have never regretted it for a second !

  16. Chris,
    Thank you for sharing your experiences! I have been anti-pharma my entire adult life. My MS experience has confirmed my suspicions. I believe there are many good people with the desire to cure MS. I don’t have any more idea than the next guy if it’s really an autoimmune disease. For what ever reason, when I took part in a Cytoxan test study at Johns Hopkins which totally annihilated my immune system and combined with Copaxone, put my ms in remission. Check out my most recent update. I’ll do a post about my Cytoxan treatment next.

    • Linda,

      Thanks for the video link. It was very interesting. And you are an incredible woman on the same mission as me…..health !

  17. OK guys, I’m going to have to ask you to move to http://fb.com/msrelief to continue this discussion. This blog is not really designed for extended discussion. We created the msrelief on facebook for that!

    Thank you!
    Linda

  18. Thank you Christopher~
    I accept your apology :). I’m looking for people to spotlight on the home page of this blog. I’ll email you and send you a formal request.
    Linda

  19. 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. http://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

  20. “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.”
    Although 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.
    “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.

  21. Robert,
    Tell us a little of your story! How long ago were you diagnosed with MS, how advanced were your symptoms, when did you do the Liberation treatment and how are your symptoms now? We’d all love to hear!
    Linda

  22. has really gained a lot of information from this blog and have really bookmarked it in the list of my favorite blogs on disease.

  23. Off-late one of friend’s mother was also suffering from similar daises, as the resources are very minimum here in India, this article has given me lot of information. Thanks and bookmarked.

  24. 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.
    In the meantime, medical institutions in other countries plough along with research from trials that not only provide good evidence on the safety of stem cells, but also their efficacy for many disease conditions with autoimmune causes. For example, the current accepted treatment strategies for MS are only known to decrease inflammation but have no effect on repairing material damage to the CNS, effectively reversing the disease. What isn’t yet accepted in the medical community is that stem cell transplantation demonstrates a new approach for supporting restoration of tissue through remyelination. Through multiple clinical trials that have already proceeded to phase III, it has been well-established that mesenchymal stem cells moderate responses of the disease and stimulate repair of the central nervous system. In these studies, adult autologous mesenchymal stem cells have not only been safely administered to MS patients but have proven effective as a potential therapy for MS. Approved Clinical Trials involving small numbers of patients have occurred for the past half decade in medical centers outside of North America. As a result, various medical treatment centers have already derived protocols for extraction, culture, and treatment of MS patients with autologous stem cells. A review of popular medical journals actually reveals a widespread consensus on the efficacy of mesenchymal stem cell transplantation as a therapy for MS patients.
    After 18 months of treating MS patients, CCSVI Clinic is well along with its program. “Success means different things to different people, but I’d say we’ve had much more than we could have hoped for when we first started.” says Dr. Avneesh Gupte, Neurosurgeon with CCSVI Clinic. “For the past year we’ve been adding autologous mesenchymal stem cell transplantation to the liberation therapy procedure and that’s when we really started to notice a significant change in patient outcomes”. Autologous Mesenchymal stem cell transplantation (AMSCT) means that the stem cells are taken from the patient’s own body and are cultured prior to transplantation at various times over an extended period. With the patient as the donor, there is no risk of transplantation leading to cancer as opposed to the risks of transplanting embryonic stem cells. AMSCT is now regularly used in North America for the treatment of Hodgkin’s lymphoma and non-Hodgkin’s lymphoma as well as other diseases with remarkable results including cure for many patients. “If it works for some diseases, is safe and well-tolerated by the patient, then why not other diseases? We believe that Multiple Sclerosis can now be added to that list.” says Gupte.
    In the past four years Gupte has performed over 1500 autologous stem cell transplantations for many types of neuro-degenerative diseases, including MS, cerebral palsy, ALS, Crohn’s Disease, Huntington’s, and Parkinson’s among others.
    For the past year, CCSVI Clinic has not done the ‘liberation therapy’ for MS alone without the combined stem cell transplantation in the same 12-day protocol sequence. “Once we saw how dramatic and long-lasting the outcomes were with the addition of the stem cells, it didn’t make sense to do it any other way.” says Gupte. Most MS patients would agree. Lawrence Vermeersch of Kenora, Canada is convinced that it’s the stem cells that are continuing to make the difference in his recovery. “I’m thinking it will take a year to full recovery, but I’m continuing to improve every day.”
    Jessica 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.”
    “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 details visit http://ccsviclinic.ca/

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