Friday, July 10, 2009

Just the facts about CCSVI

The woman who put all this together for us also broke it down in laymans's tems for people like me! Here is the text and it's pretty cool, but keep in mind that this is evolving by the hour. The Dr. out at Stanford who is doing this has cleared his entire summer to see nothing but MS patients due to the massive amount of inquiries he's getting. He's also a pretty cool guy and is more focused on the patients and making a difference in people's lives. I'm quite sure he could make a more than comfortable living staying in the cardio-thoracic field in which he has specialized in his career, but here we all are knocking down his door and he said "come on in!"

Here's the text:


1. What is CCSVI?
Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long creates “slowed perfusion”...a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. This slowed perfusion has been linked to fatigue in MS patients.

2.How is it related to MS?
Every MS patient tested so far has it. Over 100 MS patients in Italy have it. They were tested by Dr. Paolo Zamboni. Four patients in the US have it. They were tested by Dr. Michael Dake. Six clinically defined MS pateints and 3 probable MS patients have it in Poland. They were tested by Dr. Marion Simka.

None of the normal patients (controls) tested have it. None of the patients with other neurological diseases have it. Only people with MS.

3. So???? Maybe the MS lesions cause this. Chicken and egg and all that....right? Couldn’t the lesions do something to the veins?

Nope. We already have a couple of medical models for the process of Chronic Venous Insufficiency in the brain and spine....because it happens in other places in the body, and we’ve known about it for years.

a. Chronic Venous Insufficiency in the legs. This is a process which begins with reflux and blockage in the veins of the legs. The deoxyginated blood can’t get back to the heart, and it causes edema (swelling) and leakage of red blood cells and fluid into the tissue of the leg. This creates petechiae (little blood spots) or venous ulcers (really gross lesions on the legs). It makes collateral veins (called spider veins) that try to take the blood back, but can't.

b. congestive venous myelopathy. This is a process where blockage in the veins along the spine cause the veins to leak red blood cells and fluid into the tissue surrounding the spinal column. The result is demyelinating lesions on the spine. Paralysis, balance and bladder problems result.

4. Well...that’s all fine, but I’m on an immune modulating medication, and that will take care of this problem, right?

Actually, no. CCSVI has been found in all MS patients, whether or not they are on immune modulating medication. My husband was on copaxone for 2 years, but he had 2 blocked jugular veins. Dr. Zamboni tested 65 MS patients, many who were on immune modulating medication, and they all still had CCSVI.

5. How can I find out if I have this?

You need to be tested by a doctor who specializes in radiology, because in order to see inside the veins, you need a venography. This is where dye is injected into your veins to see the blood flow. Doppler ultrasound can tell you if you have reflux, but dopplers are very dependent on operator skill, and can give false results. The only way to be sure is to have a venography or magnetic resonance venography or your jugular and azygos veins.

6. My neurologist read the research and said it’s impossible, that I can’t have this. Besides, it's unproven.

That’s your neurologist’s opinion. This is just the facts, ma’am.
Ask yourself....are your neurologist’s opinions based on fact? Ask s/he what they believe causes the MS demylination process. And ask for the facts, not speculation.


So this is my primer for CCSVI. I hope the trend continues is about all I can say right now. I leave tomorrow and will post next when I actually have something to say about the actual surgery.

132 comments:

  1. HI there,

    Am I correct in thinking that you are going to have an operation to correct your CCSVI? If so I am really interested in the progress of your journey. My mum has ms.kyou

    Thank you

    Richard

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  2. Hi, The information is quite intersting. I have MS and I interested to find out how you made out. I have alot of the same problems that you mention in your piece.

    Thank you
    Michelle

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  3. This is very, very interesting. It makes sense, and the data available so far stands up for itself - all Multiple Sclerosis patients tested have CCSVI, while all placebos tested did not. Only MS patients tested positive. As an 'unexplainable' disease, simple explanations are often found to hold the key to unlocking the mystery.
    Its bad news of course for the pharmas who may find themselves out of pocket with a physical intervention treatment rather than drugs potentially holding the cure. Of course I would speculate that while it can stop the progress, it cannot do anything for the existing lesions. The drea.MS page on Facebook has many data collated on this subject.

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  4. Where are you getting this done? How did you go about it? Who did you contact? Is this expensive? Please let eveyone know your results and how your recovery goes.!!!

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  5. W5 did a show on this on November 21, 2009. I t is truly amazing.

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  6. For the first time in my M.S. life am excited
    about a breakthrough. I too would like to know how to go about getting a magnetic resonance
    renography done on the jugular and azygos veins.
    I live in B.C. Canada. Anyone out there know?

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  7. Hi... I am interested in your journey... this sounds very promising! I have m.s. also and the fatigue is great... I have two wee ones and want to be a big part of their life... I am in Toronto Canada and don't know how to get this done also... any advice? Let us know how you make out!!! Best of luck!!

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  8. Does anyone know how someone from Canada can get this treatment. My Sister and I both have MS. She is Wheelchair bound, I am not in a wheelchair. We both are looking to get treatment in canada? Where? can anyone help?

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  9. My husband has had MS for almost 20 years. We live in BC so if you find out where you can get help in BC, please let me know.
    Thanks and good luck!

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  10. Hello everyone, my name is Christine and this is the first time I have ever posted anything on any site so I hope it's helpful. I was diagnosed with MS 7 weeks ago. This is just in response to the people who were enquiring about who to get in touch with in Canada about receiving treatment re CCSVI. I live in Cambridge, Ontario and McMaster Hospital, Hamilton, Ontario are looking for participants in their study, as are State University of New York at Buffalo.

    Buffalo researchers are now recruiting 1,700 adults and children from the United States and Canada. They plan to test MS sufferers and non-sufferers alike and, using ultrasound and magnetic resonance imaging, do detailed analyses of blood flow in and out of the brain and examine iron deposits.

    Another researcher, Mark Haacke, an adjunct professor at McMaster University in Hamilton, is urging patients to send him MRI scans of their heads and necks so he can probe the Zamboni theory further. Dr. Haacke is a world-renowned expert in imaging who has developed a method of measuring iron buildup in the brain.

    “Patients need to speak up and say they want something like this investigated … to see if there's credence to the theory,” he said.

    Good luck in your quest everyone!

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  11. I'm curious.....I have had MS for about 23 years now and actually manage quite well with it. The one symptom I've mentioned for years to my various doctors is a periodic (perhaps a few times a year) locking of the jugular vein in my neck for about a minute or two to the point where I am in great pain and cannot swallow. I'm pretty sure it's related to CCSVI. Does anyone else out there with MS ever have this symptom?

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  12. Correct me if I'm wrong ,but I don't think anyone in Canada is doing the procedure yet. Dr. Mark Haake who works out of Buffalo as well as McMaster in Hamilton. I've seen postings saying Dr. Haake is urging patients to send him tests that U have sone. Simply put, old Mri's you may have had are not sufficiet. These tests have to be done is a specific manner in order to properly detect Narrowing or blocking of veins.
    I understand he is getting flooded and overwelmed by insufficient reports and / or emails. Reality is people the ball is rolling here, but somehow we have to be patient and let these guys do their work so it can benefit us all. Nothing wrong with contacting these guys and asking to be part of the study. We hav to understand that not all of us are going to be accepted soon and there are thousands of people effected.
    Put pressure on all levels of government to help fund some of this research and with recent publicity, hopefully more qualified people will be coming up and helping with tthese studies and speed them up.

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  13. I notice nobody has answered the question, where can we get this done? We live in UK and are willing to pay before we run out of time. DOES ANYONE KNOW SOMEONE WHO WILL DO THIS PROCEDURE?

    Thanks

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  14. As far as I know Dr Zamboni is doing it obviously as well as a Dr Dake ( I believe that's the name) out of Stanford University in Buffalo. I know some other reaserch is being done in other countries. Not sure if they are doing the treatment though. Anyone that feels I've given false info or can add to mine feel free to do so. I'm from Canada and here we are just fighting to get this reseach moved in to high gear as the medical community won't accept it to readily untill it can be proven on a higher scale. What I don't understand is that knowing the risks are in doing a stent or "balloon" treatment,why do they not just do some trials doing the procedure and see what it does to at least alleviate symptoms if nothing else? Even if it's not a cure, people would just be so gratefull to have some relief ohter than from drugs which isn't necessrily doing the job anyway. I know there is always risk with surgery, but most people are just so frustrated with drug treatments that alot would want to give this a shot.

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  15. I have a feeling that this is it!!!! Everything fits. I get pain in my neck around my jugular vein at times ,too.

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  16. This is in response to Kathy...
    I was diagnosed with PPMS in 2002 and am now in a wheelchair. I have experienced the "locking jaw" that you describe. Thought it was just me!

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  17. Thanks for your response. We are in UK Dr Zamboni won't accept patients outside Italy, which I can understand there are enough Italians queueing up for the treatment. I will try to find some info on Dr Drake and see if he will take a patient from the UK. I heard there was a guy in Poland doing the procedure. Has anyone got any info on that? Thanks

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  18. I live in Brampton, ON and have had MS for 7 years. I had kids before diagnosis and 2 after, one born just 4 wks ago. This new breakthrough is like a godsend for me and my family. I know Dr. Haake works out of Hamilton sometimes but does anyone have his contact info? What do we have to lose by signing up to be part of his study as compared to what we could potentially stand to gain????

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  19. Hello,
    Ilive in Calgary Alberta.
    I hope that this will work for all of us. Now I use a walker and hopefully I will be able to go back to my cane or even...no cane!
    What do we all need to do to make our neurologists really help us!

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  20. Hi I'm from Winnipeg Manitoba. Hi to fellow Canadians. Some of this may apply to other countries . In my opinion it will be very important for everyone to keep pressure on the MS Society here to make sure they can fund as much research as possible. I've also sent letters to the Canadian Institute of Health Research asking them what role they can play in this. I've contacted Federal and provincial Health Ministers to see if they can free up funding for some of this research.
    Like all of you, I want this to be beyond the research stage. Unless you are lucky enough to be part of any trials, put pressure on anyone that may have influence on helping here.
    I'm not sure what the neurologists think of this. I know of a nurse that has MS and she says this all makes sense to her although she isn't knocking down doors yet to try to get treatment done. Unless a neurologist is buying into this now, they will want to see reaserch on some decent levels and see what the results are. I have an appointment coming up in two weeks so I'll know then what his thoughts are.
    I woud like some neurologists to take it upon themselves to study this. At least do the tests for themselves to see if this condition is the common link. I don't know how easy it is for them to do this unless you are strictly doing it as research. Why could they not have some tests run on some of their patiets and check into this somwhat also? I don't know.

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  21. I also have a good feeling that this is leading in the right direction after years of travelling down the wrong path! I had my annual appointment with my Family Doctor yesterday. She thought the resarch sounded promising (based on her knowledge of science and medicine). Hope my neurologist agrees! So often they don't as they have NO IDEA how ms changes every part of your life. After 18 years of ppms (9 in wc) I would welcome any improvements. I would be willing to pay for scan, treatment etc. Kudos to Dr. Zamboni for "thinking outside the box"
    Fredericton, NB Canada

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  22. I think anyone with blocked veins would be able to have them unblocked, M.S. or not. How cruel would the doctors be to say no, you have to live with this condition because its associated with M.S. I would also think it would mean a huge influx of cash for some hospitals in these financially troubled times. niagarafalls,ontario

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  23. Perhaps we look at the huge cost that providing these treatments would cost the medical system and potential lost revenues from the pharmacutical community. Don't worry, the pharmacies won't fail to make their millions just because this proves to be a good treatment. They will still make from other illnesses.
    Look at this from a different perspective. Think of the thousands of people that could potentially be given a chance to be finacially productive on their own and not be a burden on the insurance or CPP dissability systems. Also, is there incentive from the insurance companies who fund these expensive drug treatments to perhaps throw some money into the reaserch on CCSVI so that they potentially may not have to cover the medical costs of MS patients to the same degree as they do today?
    There isn't anyone I've talked to that says this whole concept of CCSVI doesn't make sense. I think that even neurologists must honestly think that this perhaps this could be a breakthrough. I just think that they will be slow to accept it or at least say so publically intill they have sufficient confirmation of results.

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  24. You know I find this whole idea of CCSVI so simple and noncomplex. For years researchers try to search for medical cures in very complex manners, Not that this whole idea is extremely simple, but why, with the technology we have today would someone not have noticed and payed more attention to this idea of restricted or blocked veins. Even from a different perspecive other than MS, blocked veins can't be good for you. This idea was looked at years ago. Why was some research or studies not done more on this years ago. Why does something so simple not carry any weight. Why are we always looking for complicated answers?

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  25. 'I've made my appointment to my GP to ask for a radiologist to ask for a doppler ultrasound or a MRI venography, do I have this right? THANK YOU

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  26. That's a very good question as to whether you have a right to ask for these tests. The other question I have is do our standard radiologists really know what they are looking for and how to find it. Would they be up to speed enough to locate what we are looking for here. Will any MRI have capabilities to to a MRI venography. Hopefully a radiologist can shed some light on this for us or anyone else that has those answers. I would just want to make sure that the person reading the (proper) test really knows what he is looking for and how to find it, becuase you may not get a second referal again from your doctor.

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  27. A great resource for anyone seeking information on CCSVI is the "This is MS" website or the CCSVI Facebook page. The folks on these sites have been following this research for some time now and have devoted a great deal of time with gathering information for when this finally hit the press. They are prepared and well-informed and can answer many of the questions posted here. There are only a few doctors that are doing this procdure, but I'm sure with all the recent media attention, that will soon change....

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  28. My wife and I live in London, Ontario and she is suffering from MS. Can any one provide information on where in North America or Europe she can get a venography.

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  29. good luck hope it works please post how were an how much this cost,s

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  30. My better half was diagnosed nearly 2 years ago with MS. Our lives have changed in so many ways but one constant has remained; our LOVE for each other. She has been an absolute inspiration to me and all that know her. She has chosen to take the high road and to be upbeat and happy inspite of the fact that she is (temporarily) paraplegic and is in a wheel chair. I come from an engineering background so when we both viewed the W5 broadcast about Dr. Zamboni's work with CCSVI and how this venous insufficiency relates to MS, we were blown away. It simply makes sense for the first time. When I contacted her local Doctor about having an ultrasound performed on her neck to check for the narrowing of the veins her was quite unreceptive. You may also find the same type of response from your GP or even your neurologist. We have to knck on the right door folks. This electronic sounding board is a tremendous resourse for ALL of us who are trying so desperately to help open the door for our loved ones who have this debilitating disease. Let us HELP each other by posting information about how and where we can get the necessary testing and hopefully treatment for CCSVI and MS. Thanks to all of you who have read this and may God Bless the wonderfull individuals for setting up this website and providing such a great opportunity for all of us affected by MS to have an information sounding board. Barry in Smiths Falls Ontario

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  31. My neurologist tried to make me feel like an idiot for even mentioning CCSVI to him. He said it was just the latest "snake oil". It really pissed me off. He's been in practice for over 40 years so I sort of understand where he's coming from. He did say that he'd never heard of CCSVI though so he didn't even know what he was talking about. We're going to run into this with a lot of neurologists (close to 100% of them). Also, the drug companies are not going to sit ideally by. They are going to do everything that they possibly can to bury this cure/treatment. Even the MS Society isn't chomping at the bit for a cure. A cure whould make them an afterthought and put them out of a job. So, who can we actually count on.....we can count on the millions of MS sufferers to raise hell until CCSVI is given the credence that it so rightfully deserves. I was diagnosed 8/08 and this is the only time I've had hope for my future. I'm not going to let anyone take that hope from me. I will fight and I will be heard. I promise all of you other MS sufferers here that drastic change is coming.
    A free piece of advise, if you own stock in drug companies that sell MS drug therapies, SELL IT NOW!

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  32. You know, rather than just sitting and hoping, we (MS sufferers) and the families that support us might have to resort to massive organized protests or gatherings in front of our health centres and/or parliament buildings and really get the message out there.
    I have a doctors appointment coming up here soon and I'll get a better idea of where my doc sits on this whole subject.
    God forbid we have to do put ourselves through more stress than we need to push for what's right, but I'm in if the need arrises.
    Make this a political hotcake and we might see some things happening sooner than later.

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  33. I agree with the previous post on protesting. I too am ready to resort to being involved in a massive organized demonstration to get things going fast. We know we likely have CCSVI. We want the test confirmed so that we can have the surgery now. But the problem is who can we direct our demands to. Another protest is just another protest to most people, government, and "health centres" . Where is the key place that MS sufferers can go and protest to in Canada? If we could all agree on a place, date and time in our own regions, we could start demonstrating. Does anyone out there know where we can get our voices heard? There is too much beurracracy, and we'll never find out who to go to so that we can get our requests heard. Cries out to neurologists won't get the ball moving any faster. Some say the operation is risky. Especially if the surgery to unblock the veins need be done more than once (which is what is happening to ms patiens, I hear). I thank God for Dr. Zamboni's findings! A massive breakthrough. The surgery or intervention needs to be advanced or deemed safe. Veins are more delicate compared to an artery, and can only take so much surgery, I would imagine. Anyway, the bottom line at the present time is this: We know CCSVI is there. We know the veins need to be opened up soon. We want health intervention now. Don't let billions of dollars keep pouring into drug companies. We need to get all our voices heard, so that the top health/government people (whoever they are) will start acting. Does anyone else have any ideas about an organized demonstration?

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  34. When is our next municipal/provincial/fedral election? Make this a deciding factor for sure ! Nothing will be done unless it's in their best interest to do so. They will let us die for the mighty $$

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  35. I've written a letter to my local newspaper and congressman. I think the people to contact are the vascular surgeons. Sure, one segment of the industry stands to lose from this, but another section will gain a whole heck of a lot of patients. I talked to a childhood friend who is a Chief Surgeon at a prestigious US university and she told me that if there is merit to the research, the procedure will catch on pretty quickly. Just keep on keeping on. Judi

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  36. I am 26 years old and have M.S. I live in the Us and have been on copaxone. I still feel tired i still can not keep up with my five year old little girl. This disease is robbing me of my life and my daughters. If this is real i would like to find out how i can get this treatment. Who do i go see? I want my life back and if this will help even a little i am willing to do it. Jennifer H.

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  37. l have ms an 3 young kids i would give anything a go to have a better life how were an how much for this treatment it mighted b a cure but it just might make life better i think if the people who r against this had ms their mindset would be different

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  38. In response to the last two posts here, I'm from Canada and here's the situation as far as I undersstand it. I've seem nmy family doctor and I don't know of any way that anyone can rush out and have this condition checked out too soon. My doctor told me that if he attempted to send a request for these typses of tests right now he would be laughed out of town. These types of tests need to be requested by a specialist. I don't know what the vascular specialists are thinking about this right now. They may want to see how this research turns out before they get on board.
    We all want this procedure to be as positive as it sounds. I've had MS for 10 years and my life has changed dramatically also. I don't know if there is any way to to get anything done very soon unless you know the one or two doctors in the US and have the money to pay them to do it. If I'm wrong about this , someone please correct me.
    I don't think anyone is against this treatment. My doctor said it seems to possibly make sense. Canadian medical community as far as I know is of the mentality that they don't jump in with both feet untill the treatment can be proven on a better scale.
    I fist saw all this information and I was totally excited to get things done right now. Reality is it is going to take some time. The best thing to do for now is not to let this stress us all out. Stay informed. Keep putting pressure on anyone here that you think can keep things rolling along here. Personally I hate being on the medications I'm on. I know though that I'm staying in as reasonable condition as I think I can be. I know some of you have been effected by this more extreme than I have. We just have to stay on course here and be patient as hard as that will be to do.

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  39. To all of you who are taking drugs for your symptoms... here's another reason for you to push for this research to move forward as quickly as possible! I found this posted from someone on the "ThisisMS" message board.

    “I was just speaking to a very good friend; talk about six degrees of separation, his friend is friends with Jeff Beal the gentlemen responsible for the documentary who got treatment. He told me that the reason it has taken 2 years for this news to come out is because BIG PHARMA was trying to discredit Dr. Zamboni and ...keep this discovery from leaking out.”

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  40. In regards to the last post, I sure hope that BIG Pharma isn't responsible for any delays in this, but I would n't be suprised if that were the case. I have a friend that is on tysabery (if thats how you spell it). He had harsh reactions to it initially so they took him off of it. Later they put him back on and guess what , his stomach just doesn't react nicely to this drug. His neuorlogist says that it can't be the drug causing the problem though. Is this stupid or what?
    We the people of MS have to stay strong on this and keep pushing.

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  41. The clock is ticking does anyone hear?
    Hope and happiness seem so near
    Helplessness is pressing in to freeze
    Big money, pharmasuticals, or unebelief
    All the politics and scientific pride
    My MS is waiting, be too late once I've died

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  42. Hi All,
    I live in Toronto. It's been 8 years that I am living with MS. Here is some info that I found:

    Yasmeen Sayeed. B.Sc, DHM, MBA
    President & CEO
    Surgical Tourism Canada Inc.

    17425-64th avenue
    Surrey. BC. V3S1Y8
    Tel: 1-877-871-4315( Toll Free) , 604-575-4316
    Fax: 778-574-7253
    Email: ysayeed@surgicaltourism.ca
    Web: www.surgicaltourism.ca

    I managed to book an appointment with a Vascular Specialist through my family doctor. The blood Iron level is too hight for me.
    I'll keep you posted. You can contact me by email to: 2mspatient@gmail.com

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  43. Hello I'm from Holland and also have MS. A study is done here at the VU (University) Amsterdam to verify the study of Mr. Zamboni. On a Dutch website there is a small list of Drs who are doing this procedure:
    Italy: Prof. Dr. P. Zamboni, Universitá degli Studi di Ferrara, since 2008
    Poland: Dr. Simka, Pszczyna, since October 2009
    England: Dr. Anton Collins, Royal Victoria Hospital in Belfast, since October 2009
    France: Dr. Claude Franceschi, Parijs, Saint Joseph Hospital, since 26 November 2009
    America: Dr. Dake, Stanford University School of Medicine, since May 2009

    I hope this treatment will realy change the life of MS patients in a positive way. It does give me hope that an answer why and a cure is in the near future, maybe its happening right now. It does make sense and I did have an AHA moment. Just before my first "attack"of MS I had a weird headache for days. Just as if my brain needed more space or something, really weird. And I had a lot of headaches near my left temple as if someone stuck a dagger in my head. Since the "attack" (which caused a complete disfunction of the whole left side of my body, which luckely is restored) I do not have any more such headaches and I never had another episode since then.

    To every MS patient who reads this, good luck, enjoy the good days and see your Neurologist and demand to be tested! I will do so as well. The test is not invasive, so why not take the test, that way you will be sure and wont keep wondering, what if....

    Greetings from Holland

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  44. Does anybody know of any interest in the medical community in Israel ?MS research is big in Israel ( Copaxone, Rebif originate from studies done there ) so maybe somebody will raise to the task, even though there are no Pharma companies monies to support it.

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  45. I pray this is the answer and all of us that have ms can get our lives back I've tried to hold a positive attitude for 13 years now I cant walk. I deserve a second chance it would be a god scent There are so so many things I have missed I would do so much! Good luck to all of us.

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  46. Hello to all, this will be my first post. I am residing on Vancouver Island BC and have MS enduring many of the same problems as all with MS .My thoughts have taken me out of the box after reading so many articles of information and that drug companies likely loose money if the liberation treatment is proven to be a success and what has been believed for years to be the cause or treatments is now under scrutiny and clouding what’s important .We people that suffer from MS potentially loose far more than any drug company and where is it written in stone that we need to recognize this procedure as a cure right a way or the vascular restrictions a cause when in fact could be viewed as a valid vascular problem that exists in such high numbers in MS patients .My thanks to all involved in the current treatments that help so many patience’s and there families cope and lets not forget there has been cures in our history and why not now .The Iron build up in the brain believed to be left there by insufficient blood flow seems to be a problem all its own and could be dealt with more directly without down playing all the efforts and research that has been achieved recently and or through the years .Whether or not this is a paradigm shift this will do nothing for victims as timely as we would like it too and the recent findings on treated patients of Dr Zamboni has given many MS victims and there families hope .Why not treat a known condition with a procedure that works no matter what the cause ? Dave G

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  47. I agree Dave. I don't think we need to understand the cause of restricted or twisted veins at this point. Go with the procedure that seems to have reasonable success and keep researching the causes of this later. The vascular surgions surely have been working with stents up to this point in other areas. This is not ground breaking and totally new treatments. I know there might be thoughts that ballooning may work better than stents or vise versa. This will only be answered by doing these procedures and monitoring the outcome. Is there honestly any better way? I guess there has to be protocols established though so the prefered methods are used.

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  48. I have an appointment with my neuro. on Jan 6th.
    If she makes any stupid`comments like some of your neuro's did, I will post her name with her comment all over the internet for the whole world to see.

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  49. I think the doctors should be legally responsible for denying us the tests we need to detect CCSVI.
    If there are any lawsuits, there's going to be a`long line.

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  50. How much government/private money did doctors use up before Dr. Zamboni suggested it's a plumbing problem? I think since doctors make good money anyway they never really cared enough to find a cure.

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  51. I have an appt. with my neuro on the 13th. He does know about CCSVI but it's going to be interesting to see how accomodating he's going to be about putting me in touch with the right people for the next step? Everyones true colors come shinning through! Good luck to everyone.

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  52. I have an appointment with the neurologist who Dx'd me 14 yrs ago, on Feb 1st. It'll be interesting to hear what he has to say. I don't think the treatment is being done yet but let's hope we can make arrangements for the CCSVI tests to be done. Anxious

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  53. I think the message you will get from your neuroligists will be that untill more research is done on CCSVI they will be going with thier supposed "proven" treatments. I had my appointment with my neuro out of Winnipeg and that's the message I got. Don't get your hopes up too high but don't lose hope either.I don't think we'll see much action until some research gets done here. Not being negative here, but that's reality. I've been watching a websight called thisisms.com . Its very informative on whats going on.

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  54. It is my understanding that Dr. Zamboni performed the testing for the malformation of the jungular veins using combination of US (ultrasound)and venous pressure comparison of different regions.

    I can not fathom why would we have to "beg" and protest and threaten lawsuits to have this type of simple (yet specific) procedure performed.

    This test/check I believe we all have to get to figure out for starters, if each of us indeed has a blocked/clogged, twisted or somehow else restricted veins.

    I am planning to print out the research and findings (as much as I can find), study it myself and point out to my neuro which specific tests I want done.

    Good luck to all and lets post our progress on this issue for each other's benefit!

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  55. I had my first ms episode when I was 25. It took 26 years to be diagnosed with ms. The year was 2002,and I at last had a reason for all those symptoms that we all know too well. I have a wedding in May to attend, my daughters, I want to be able to walk down the aisle in church for her. I need this procedure now. I will not wait for another 25 years, I havent got the strength or time left. I will do whatever I need to, help push this amazing procedure to the forefront.

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  56. I have concluded that Big Pharma wants nothing but to keep us ill and we go right along with it. I stopped taking my (proven all but useless) Copaxone a couple weeks ago after 3 months of drinking the KoolAid. No one is going to get me well except me. There are no doctors knocking at my door offering the latest treatments. The onus is on me to take responsibility for my health. If this means a strict diet and exercise, alternate medicine or CCSVI surgery, then at lease I know I've done the best for my poor body that I can. And if all else fails, I'll take those horrible shots. But why start with that? Because some old guy in a white coat gave me 4 drug choices and basically said, pick your poison? No, thanks.

    Much love to all of us trying to get well. The answers are out there and its up to us to find them.

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  57. I've not been diagnosed with MS though my neurologist is saying that it is looking likely. I am so scared. I try to stay positive and say that this is only a chance but it still frightens me.

    Listening to some of the comments here, my heart breaks even further with the cries out for this treatment and slow action or inaction for many. It almost feels like the scene in the titanic when they locked the doors to the 3rd class.

    I wish they could hear each individual story and feel how it feels to have MS looming over your head. I want this done and would be a guinea pig for the procedure in a heart beat but then i consider the people who have been living with this diagnosis for over a decade and it doesn't seem fair.

    My neurologist says that MS is diagnosed over space and time but i don't see why a diagnosis would even be relevant. Let's get the scans done now so that a line up for the surgery can start immediately for those that want to try it.

    Good luck to each one of you.

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  58. I have had MS for 13 years. I teach about the human body and am knowledgeable about the details of the circulatory system. My advice to all you sufferers like me is eat foods that lower your blood pressure and improve circulation. Fresh garlic, fresh ginger, cayenne pepper. This will improve the circulation in your veins and buy you time for this research to get finished. Try and get mild exercise, if you can.

    Good luck guys!

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  59. Greetings,
    I noticed that a lot of people mentioned appointments with doctors.
    Any good news?
    Any bad news?

    Is there any luck to get the diagnosis for CCSVI in a private clinic in Canada or Europe? how much?

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  60. I see a lot of disappointed comments on this thread and it is heartbreaking. The docs I've spoken to are excited at the possibility but waiting for more data. I truly believe they want the cure as badly as I do, they just can't read the current data and say yeah sure, that's it. There are complications and unknowns and studies need to be done to know for sure which is the best treatment.

    If the Buffalo data supports Zamboni's thesis. I am willing to be a pioneer and be part of a clinical trial. The more of us who do take the risk, and share our data, the sooner we get to a good treatment for all.

    Why can't they run a bunch of trials all over for those of us who are willing? That would accelerate the whole thing. Otherwise it's years more of waiting. I'm e-mailing and speaking to anyone I can think of who might be doing anything remotely related research wise.

    I just got called back and am donating skin cells for a new stem cell study at UCSF (USA) next week. We'll still need new brain cells to repair our old lesions. Stem cell research is very complimentary to CCSVI for people like me with progressive MS.

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  61. I live in Mewfounland and had M.S for 9 years. Like most of of you I'm sick and tired of waiting. My neurologist has the same outlook like the rest of his field, wait and see, what actually comes out of this CCSVI with more research and testing. Fuck but I'm not waiting anymore, parden the language but can someone direct me to a number, name of the doctor in Ottawa who is testing for CCSVI cause my time is getting short and like others I need this to be able to do inportant things in my life, my daughters life, my girfriends life. my family and friends life, and waiting is not going to help one bit. So PLEASE anyone give me some info that i can go on. Thanks

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  62. In 2004 I was denied stem cell treatment By Northwestern University because I have chronic progressive MS. I was diagnosed in 1988,.put on disability from my job in 2001 ,and I am curious how one gets one or both treatments (stem cell and CCSVI)! I will be the guinea pig for the rest of my brothers and sisters with this disease. I will not support the drug companies in their fiascos or should I say "no research for progressives" approach.

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  63. hey - the Olympics are coming to Vancouver! Who is up for a massive demonstration? All able-bodied MS patients and canes and walkers and wheelchairs meet up at, say, the Vancouver Art Gallery? Wouldn't that be attractive? Just a bunch of patients asking for their right to be tested amidst all the money that has been sunk into the Games! I'm sure we'd get some attention. We could tell the pharma companies to focus on, hmmm... steroids for athletes. We don't want drugs anymore! Never did! I say if the games are afoot - then let's play.

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  64. I'm so excited about this research!! I hope this is a cure for all MS patients out there. The worst is over guys! stay positive.

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  65. We know all too well the effects that MS causes on its' victims as well as families. We found out in 1980 shortly after our first child was born that my wife had MS. We have tried just about every source under the sun to find help. She has gone on Vegetable diets for years, no gluten diets, had the cortisone treatments for a week at a time. She's been on Avonex, Beta Seron, Copaxone, Rebif and Tysabri all of which have done very little in our life with MS. I'm not saying that any of these are not good methods for treating the MS but just that they have not worked for us. The news of this CCSVI is of course the most interesting news we've heard except for the process of remilination that we heard was being studied. I would ask that for those people who are willing to put their life on the line for the cause of CCSVI should have this right to enroll in a study. We would be willing to travel anywhere in the U.S. to seek such a study but as most other inquirers want to know Whom do we Contact? How can we get on a list for an upcoming study on CCSVI? We tend to live very positive and keep our lives as active as possible but it would be a miracle to be able to live our senior years without the wheelchairs, power scooters, walkers and such. If this isn't meant to help us May God help the younger ones diagnosed recently that they can live very productive lives. Praying in Michigan!!!

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  66. I have just found out about this new information about the veins in your neck. I am really interested as I am young and getting something done early I am sure would be beneficial. I am slightly concerned about the post procedure problems and how long they last. Does anyone have any further information about this.

    Kate 29 years old RRMS since 2002

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  67. WE MS sufferers have to write to state representatives, hospitals, newspapers, I've even sent info to the White House re: lack of media coverage about CCSVI, WE have to take a stand!

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  68. Morgantaller or Haacke
    I think they put Henry out of business a few years back but Dr. Mark haacke is apparently still around. I guess all we have to do is find him.
    Chris Johns

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  69. Very excited about the CCSVI liberation treatment - it is pretty obvious that this idea is not being accepted readily by the drug companies - if all MS sufferers could get the special dopia scan, then half of the theory of Dr Zamboni that the veins are congested would be proved, surely we would be half way there. UK are lagging behind as usual.
    In the meantime I am gluten free, dairy free, red meat free together with suggested supplements and of course as much exercise as I am able to. I am trusting extract of grape seed to help my circulation - power to the people - hang in there. England

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  70. I am from Calgary, Alberta. I found a private clinic in Vancouver, B.C that is doing ghe testing for ccsvi. I am going in April to have it done and then we will go from there. One step at a time, I suppose-I just feel that we have to do our own researching and go where we can because who knows how long we have to wait until it is "proven." Whatever! I will go where the hope is, I don't want to wait around for someone to decide that this is important enough to do something about. I have not yet been able to get help in my own country; my husband and I will go where there are doctors who will do something. I am very frustrated with our health care system. I will go where the hope is and so far, that means going out of my city or my country. If this is what we have to do, we will go where ever we can. If anyone is interested in the clinic I am going to, I would love to talk about it-just let me know through your posts.

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  71. terkel said To LaDawne I am from Melfort Sask also have Ms and not willing to wait for this so called Canadian health care. I have applied for two study's but have not heard back either one. I would like any information on the clinic you are talking.

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  72. Terkel-the private clinic is called Urgent Care Diagnostic Centre in Vancouver, B,C. You have to get two tests done- an MRV of your neck and head and an ultra sound doppler. They need a referral from a doctor and a certain blood test before you go. This clinic is in contact with that Dr. Haake in Hamilton and depending on the results. they will send him the results. Of course, the surgery will not be done anywhere in North America-I guess you can go to Poland or Germany for the surgery. I think that they have only tested around 50 patients at this clinic so far. I guess just one step at a time. Unless we can be tested, we won't know what to do. So, this clinic is doing it-it is private so it costs about $2400.00. It is so sad that we have to search and search for some help and that we have to pay for it. I'll stop talking about that because I am so very frustrated with my neurologist and in general, the Canadian health Care system. I could go on and on. Any way, google the clinic and see ehat they say and their number is 1-604-628-2822. My appointment is April 1st.

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  73. Thank you Ladawne Sorry for the delayed response.

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  74. we have to set up a large protest in the bigger cities, like Toronto,the ms society has all this funding, whats happening to all the so called funds, where is it going?.eh
    why cant they get their asses in gear and get the proper research moving forward

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  75. I've had MS for 5 years and had the MRI and MRV tests completed two weeks ago. They were done using the protocol established by Mark Haacke. I did not have any venous malformations or stenosis of any kind. Basically, the tests came back saying I had a normal venous system.

    Although I still continue to follow this theory quite closely, I'm less convinced that it is the cause of MS. Maybe it's a contributing factor to the level of disability, not sure. I use a cane and have foot drop, but these have been my first long term symptoms. I've never experienced the debilitating fatigue. Maybe CCSVI contributes to some of the symptoms, but not all. I guess we will have to leave this to the researchers to find out.

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  76. Hello, my name is Ann, I live in Charmhaven, N.S.W. Australia and was officially diagnosed with M.S. in 2003 and put on Betaferon, yuk! Am now on Avonex and have just been given a needle gun - yippee - painless needle insertion at last!
    On reading about Dr. Zambioni's discovery of CCSVI and its relationship to MS, I was very excited and read everything I could find on this subject. Next, I called the MS Society in Sydney, only to be given a very, very sceptical view of Dr. Z's discovery. When I mentioned that all patients with MS in his trial had CCSVI, I was informed by the representatove of the MS Society that this was a 'tiny' study and that there had now been a 'big' group studied at Stanford Uni in which they discovered that only 56% of persons with MS had CCSVI. Is this correct or not? If anyone in Canada or the USA can answer this question, I would greatly appreciate it. Needless to say, as the three or so drug companies seem to own the Aust. MS Society because they provide the bulk of the funding to it, I am sure these companies will be standing steadfastly in the way of progress into CCSVI. Also, sadly, Australia appears to be years behind the rest of world because we are under-resourced and over-regulated.

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  77. I have study in Canada and i am working in a Hotel part time. I am studying and work also in Canada.


    work and study

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  78. Hi Ann this christine from waterloo, ontario, canada. On apr 14. there will be a live web forum at 12 ET put on by the American Academy of Neurology in Toronto for journalists and the general public on CCSVI - participating are
    # Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy
    # Dr. Robert Zivadinov, Associate Professor of Neurology at the University at Buffalo, State University of New York
    # Dr. Andrew Common, Radiologist in Chief at St. Michaels Hospital, University of Toronto, Ontario, CA
    # Dr. Aaron Miller, Professor of Neurology and Director of the MS Center at Mount Sinai, New York, member of the AAN Board of Directors, Chief Medical Officer of the National MS Society

    I heard the same info you received and also that CCSVI has only worked for more than 18 months on a very small percentage of patients with RRMS, and not at all for the progressive kinds of MS. I was diagnosed in 1989 and now have SPMS since 2001

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  79. This is very exciting news. i'v been diagnosed with ms for 4 years now and for a few years have experienced a warm sensation at the back of my neck/head.I wonder if this is related to ccsvi.

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  80. LaDawne are you still out there. What have you found out from False Creek? My appointment is May 27 and 28.

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  81. I'm going on Wednesday to the False Creek Clinic in Vancouver. They do the right scans. In Canada, there may be one or two others, but False Creek was the first I heard of myself.
    Dr. Dake at Stanford in California isn't doing them any more. He was very stent happy, it seems, and Zamboni himself is not comfortable with the use of stents for CCSVI. It may be that the right stent has not been developed yet for the tender veins involved in CCSVI. One of Dr. Dake's patients had a stent that migrated, which required emergency cardiac surgury.

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  82. Terkel, My tests at False Creek went well and I do have the ccsvi according to what they know about it. I am glad the I got the tests done-money well spent. Now, what to do from here-I am researching all of this, we will go to a different country if we have to. Let me know how your tests go and I will keep you up to date on what I find out.

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  83. I'm going to False Creek in June this year and if the tests confirm some blockages I'm going to a hospital/clinic in Mexico where they do the procedure, as soon as possible. I have gone to the clinic twice before a decade ago and was very pleased with my results. I found the place clean and the staff very professional.

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  84. Has anyone heard of EchoMedical Resources International? It is based out if Windsor Ontario with their hospital in Detroit, You should call them and find out about the ccsvi procedure. Very interesting.

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  85. has anyone heard of echmedical resources international? they are based out of windsor ontario. call them and ask about ccsvi. very interesting.

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  86. Some of your information is wrong.

    Not all patients with MS have CCSVI. Some people without MS have CCSVI.

    This is from the MS Society of Canada's FAQ: http://www.mssociety.ca/en/research/medmmo_20091021_faq.htm

    "...interim findings from the work of Dr. Robert Zivadinov and colleagues. Using a sophisticated ultrasound technique to screen 500 study participants, Dr. Zivadinov observed evidence of CCSVI in 56.4% of people with MS, but also in 22.4% of healthy controls."

    So the data is not as clear-cut as you make it sound.

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  87. I am not sure that it is fair to say that some of the information that is given here is wrong. I would think that we are all aware of doctor's findings and perctentages and all that. However, people are getting the testing done to see if they have it. We are not just thinking we have it. This procedure brings lots of hope and maybe it is as simple as hoping we are apart of the 56% or whatever they say. Bottom line is that we hope this a huge break through. We are not going into this blindly; as you can see, people are paying money out of their own pockets to get the testing done. I dream of this being a cure for all of us and yet it is enough to know right now that the procedure might help some of my symptoms. This is exciting to me. I don't care if it is proven or not, I want to have it done. i think that if we let all the percentages and all the negative comments about ccsvi get us down, we would stop trying. Doctors don't know everything-I was assured that I did not have ms for 10 years. I think we have the correct information; I just know that for me, it is exciting and it is very worth it to do whatever I can to get it done. I am very hopeful.

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  88. This is a whole new approach for treating the patients with Multiple Sclerosis. In recent days it has become a new hope for millions of Multiple Sclerosis patients across the world. Dr. Paolo Zamboni, a former vascular surgeon and professor at the University of Ferrara in northern Italy developed this procedure while he was trying to understand the underlying causes for the condition which his wife was into, a Multiple Sclerosis patient.

    Doctors and hospitals across the world are developing necessary infrastructure and the expertise required to perform this procedure with good outcomes.

    In India few of the doctors at Internationally Accredited Hospitals have already started performing this procedure with excellent outcomes as per international standards. These doctors have developed a multidisciplinary approach involving Neurologists, Neuro-Surgeons, Cardiologists, Cardio-Thoracic Surgeons and Interventional Radiologists. The doctors are abreast of latest developments in this field and continuously in touch with the inventors of this procedure. They are continuously monitoring the procedure outcomes of their patients over a period of time.

    Why should you choose India?

    In India this procedure is done with excellent outcomes by expert team of doctors at Internationally Accredited Hospital at a cost which is much lower than it would cost you in USA, UK or Europe. Indian Hospitals provide you high quality service and compassionate care and has a world class infrastructure. India is well connected with the world by International flights.

    How can you get started?

    The first step is to determine whether a patient is a good candidate for this medical procedure or not?

    All you need to do is to send the following information to us.

    1) MRI of the Cervical (neck region )
    2) Doppler Ultrasound of the neck
    3) A general medical status and history

    We will show these information to our expert doctors and get a opinion from them to you, totally free of cost.

    Do not worry if you do not have the above mentioned medical information readily available with you. We have specially designed evaluation package for this procedure. The evaluation can be done here in India on outpatient basis at much lower cost. Based on the findings of the evaluation further line of action can be taken.

    Just write to us at help@safemedtrip.com for more information and help.

    The Procedure

    It all started with the Dr. Paolo Zamboni’s search to find out the root cause of debilitating condition of his wife who was suffering with Multiple Sclerosis. After studying many patients suffering from the same condition, he found that that almost all of them had a narrowing, twisting or outright blockage of the veins that are supposed to flush blood from the brain.

    Further Dr. Paolo Zamboni found that whichever patient had this condition, had a high level of deposition of Iron in the veins. Lack of free flow of the blood to the brain possibly explaining the symptoms of MS. Now the idea was to open up such blocks and allow the free flow of blood through veins to brain. This is the reason why this procedure is called as Liberation Procedure. This is done in the similar way as it is done in Coronary Balloon procedure. The patient may have single blockage or multiple blockages. Accordingly the treatment is decided.

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  89. www.liberationtreatmentindia.com would be launched in next few days to help patients around the world to get Liberation Treatment done in India with good outcomes and at best value.

    http://www.scribd.com/doc/31184830/Liberation-Treatment-for-Multiple-Sclerosis

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  90. I'v been on every website and I'v yet to find anything that contradicts Dr Zamboni so why do GP's have no trouble in ridiculing his research and testimonies of patients who have had the procedure done?

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  91. Here is one article that does suggest a weaker than 100% connection.
    http://www.windsorstar.com/health/Keep+treatment+clinical+trial+only+Experts/2907628/Research+casts+doubt+theory/2548171/story.html?id=2548171

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  92. Well, this isn't "just the facts" nothing is really. One cohort showed that the overlap was closer to 20%. Granted this may be a condition that is common to MS sufferers and granted doing this procedure may provide some significant level of relief. However as a cause the evidence does not fare well.

    The idea that you can exclude MS as a cause for something because we already have models for Non-MS patients is more opinion than facts. It's also not clinically correct. There are plenty of diseases that increase susceptibility to other diseases or as might be the case here. Share a genetic component so they are closer to "co-diseases" rather than cause/effect.

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  93. As for, "why do GP's have no trouble ridiculing his research and testimonies".

    I wonder if other people get tired of explaining this as much as I do?

    The weight of evidence simply isn't there. The pre-release data of the largest trial to-date shows slightly over 50% of MS sufferers with this condition. There's reason #1 with a bullet to question Zamboni's postulate that this is the cause of MS.

    Testimonies are not useful evidence especially with Relapsing/Remitting diseases like some forms of MS. It makes them terribly difficult to assess the outcomes. Testimonies are done to no clinical standard of care and have no long term follow-up.

    Perhaps unlike you I was around during the Beta-Interferon 1A trials. There was much hoopla then and many people clamoring for the drug and although it is a good drug - even now we are still realizing that it's not effective for everyone. I'd be cautious about prescribing an invasive, non-reversible surgery for something when the success rate is unknown.

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  94. Hello from Toronto,
    Greetings from TORONTO

    D0 MS suffers in Toronto really have to travel to Windsor or British Columbia to have the test to see if they have CCSVI? Does anyone know of a clinic in Toronto that will conduct the CCSVI test?

    Frustrated Torontonial

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  95. Have a date in Bulgaria for the liberation treatment this coming month!!!!

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  96. Hey all, I have been dx for about one year now! Live in Alberta, and run into the same attitude regarding NO TESTING for this or f/u treatment. I am also a nurse and totally believe in the connection of the findings. I can not get anywhere even with my own docs that I work for, so I feel the frustration.
    take a listen to one experience a lady from Calgary had when she went to Polland for the testing and treatment. Google "RUTHERFORD" on 630 CHED, dated June 9/10 @ 0930hrs. AMAZING...I am ready to book my flight to Polland. I think its pretty sad that our "great" medical community makes too much off these diseases to afford us patients a little better quality of life! A total lose in a billion a dollar industry if we start finding such treatments I personally think. Talk about a recession. Imagine! These so called "specialist" should be ashamed!!

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  97. There are so many percentages and such that doctors and people without ms talk about and can be used against ccsvi and the procedure. Well, I really don't care about any of that or if there is a link between ms and ccsvi. It's worth everything to me to have it done-if it helps even a little bit, it will be worth it I don't care about all the reasons not to do it; it is a simple and safe procedure. I am going to India next month and I can't wait.

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  98. My last post was Jan.3/10. Sadly my wish did not come true, I didn't walk - I scootered down the aisle at my daughter's wedding. However, I am still hopeful CCSVI is a viable treatment . I attended a seminar in Hamilton June 12, Dr.Zivadinov (Buffalo) and Dr.Paulseth (McMaster in Hamilton )Both are conducting studies for blocked veins -Note: Dr Zivadinovs time line for his study is THREE Years, Dr. Paulseth is SIX MONTHS to ONE YEAR!

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  99. I am going to Germany to be tested. I am getting a doppler and an Venograph (MRV) done and angioplasty to follow if obstruction is found. The clinic is in Frankfurt and I am nervous and excited about the results. Stents are not used, yet, even Dr. Zamboni is not 100% sure about those yet. I have had veins removed from my legs and have had these cardio problems as long as I have had MS. I get my legs looked at yearly to prevent deep-vein-thrombosis. Hence I find it very interesting that the medical world believes this should be so well researched when they no cleared arteries prevent heart attacks, cleared leg veins prevent heart attacks, cleared veins are essential with kidney troubles, which I have had as well. When my legs are injected with medication every year or two they feel liberated. They are far less fatigued. I wear support hose and have ever since I was 26.
    I just don't get why the medical professionals don't get the link. I truly feel the link.

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  100. Is there a doctor in New York doing the testing and operation,how do i get the info.on the cost etc,our daughter has MS we are desperate for help,she had taken drugs through a needle for seven years cost to the government of Canads fourteen hundred dollars a month.Now getting Botox in the muscles no improvement just sore muscles.when are they going to stop tratments that don't work and try something that proves to be working.We are desperate she will soon be bed ridden.

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  101. With the overwhelming anecdotal evidence of the benefits of liberation treatment, the thorough study of CCSVI is and should continue to be a primary research focus. However, please consider that it’s still just research as I had to discover for myself.

    Excited about the opportunity for MS symptom relief, I found a local Neurointerventional and Interventional Radiologist MD (Long title for a doc that works with blood flow in the brain) willing to discuss testing for the CCSVI condition. The appointment was set. Instead of an imaging technique, we agreed that the full angiography would be best. This has the least chance of misdiagnosis, but is more invasive. After 18 years with the MS diagnosis, I’m willing to suffer a little risk and pain. Nonetheless, it’s not too bad.

    Anyway, after the procedure, the physician leaned down and notified me that I had no blockages or restricted blood flow. The reason I post this is that even with a rational approach that this may be the outcome, the disappointment is significant. In short, the CCSVI theory and potential benefits don’t immediately apply to me. That sucks! After all the positive Net postings, I thought the dream of symptom relief may be around the corner.

    I think the CCSVI research should definitely move forward, but be aware, there is no guarantee that at an individual level, it will be helpful at all. It just created disappointed for me. Imagine if I would have flown to Poland!

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  102. A million THANK YOUS this is so helpful. I must have been living under a rock, because until last Tuesday(8-3-10) I never heard of CCSVI. Again thank you God bless you and BEST OF LUCK TO YOU,

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  103. I know several people with M.S. That are on the waiting list for an MRV and surgery if blockage(s) are identified. The wait times are now 1 year at the Albany N.Y. Clinic

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  104. I have had MS now for at lesst four years. It was a long journey to even get diagnosed. I was so excited when I saw the W5 interview with Dr. Zamboni.
    I thought "there is hope". I have known since then that i had to have this procedure done. I live in Canada and from what i have found out, no one is able to do the procedure here yet...hopefully soon. I looked into getting it done and found a doctor in Tampa, Fl and am sceduled for early November/10.
    I am hearing some great success stories.
    Just remember, there is always hope!!

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  105. Neurologist annual appointment yesterday. He said,'see you next year'.I said,'hope not'.

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  106. I have a niece with ms in Ireland. Am going to Glasgow conference on CCSVI for her next week. It's a disgrace that the diagnostic tests are not available to every MS patient - but it doesn't surprise me! Closed minds of medics + power of drugs companies = stupidity on their part and suffering on part of patients. They have a right to KNOW.

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  107. hi everyone
    went to rhode island 16 nov./10 not much benefit for me small changes, swallowing is normal i don't choke anymore, appetite is back also. they did not follow the zamboni protecal, two veins left unchecked as a cost saving reason, because majority of people do not show blockages there, well maybe i did need it. 15 yrs ms. now spms 100% blocked azygos,70% and 90% blocked jugs, with lots of webbing that was cut away. paid reduced price, $6500. now what do i do, pay someone else. to think about staying in canada, is rediculus i don't have six years to wait.
    grindol

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  108. 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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  109. I am interested in hearing from people who have had the vein treatment, what treatment exactly that they had, what improvements they had, and how long they lasted. I have MS and was first diagnosed 11 years ago. Looking for improvement!

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  110. 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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  111. I am recently diagnosed with MS in September and just found out about this CCSVI procedure last week! My MS team never told me anything about this. I wish there is more we can do to make this more public so everyone is inform of choices that they have. Because I know I will not survive with this weekly injection of Avonex, but before last week I thought it was my only option.

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  112. So here is something interesting.

    A friend of mine who works at the MS Society of Canada was mentioning that several of the Client Services staff (you know, those people who take your call when you phone in looking for information or need help filling out your CPP form) have been going on sick leave. Or stress leave. Or just plain quitting. Apparently this is starting to happen across the country.

    She seems to suspect that it might have something to do with the large amount of calls they are getting form very angry people who simply want to argue about CCSVI with them, or accuse them of being in the pocket of Big Pharma.

    Now, these people aren't scientists, they aren't researchers, they aren't doctors - they are social workers whose job is to provide information for people with MS. And they are getting a lot of abuse from randoms.

    So yeah, I get that you lot are all really angry that you have a chronic medical condition. But perhaps you could stop taking it out on the social workers? Because there are other people with MS who need their help.

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  113. I am having a MRV done next week, and it's just because they suspect the beginnings of MS due to my chronically swollen optic nerves and some other symptoms. The test was suggested by my neuro-ophthamologist just as a standard diagnostic measure, so I suppose the best way to get this type of testing is to get referred to physicians who are located at research universities. They even take my crappy insurance. Research docs will also be the most open to new ways of thinking, so try to get referred to one of those if you can. Standard docs are stuck in black and white thinking, and that kind of thinking never solves anything. Get yourself a prof at a university who treats on the side, best bet.

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  114. A new location for CCSVI Treatment (Liberation/Angioplasty) is located in Bucharest. Package price 5500 Euro including flight ticket. The name of the clinic is Dalin MEdical AngioClinic and
    Website: http://www.ccsviromania.com

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  115. A new CCSVI clinic it is available in Bucharest, Doctors team from Bucharest are certified by DR.ZAMBONI in Ferrara and by Dr. Simka in Poland to perform the CCSVI treatment/procedures.

    The price of the treatment INCLUDING Travel Expenses(flight ticket,accomodation,transfers,­all exams,angioplasty) is 8200 USD for USA/CANADA patients and for europe patients 5100 Euro Incl. Travel expenses.

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  116. Hospital Angeles tijuana Mexico Dr Luna, Dr Morales

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  117. I found your blog when searching for similar blogs to my aunties and thought you might be interested in taking a look. It is called Bette Bravo (named after their dog) and it has Information and lifestyle tips for Multiple Sclerosis and CCSVI treatment available.


    My Auntie, Jenny, lives in Norwich, England and suffers from Primary Progressive MS. She has had it for a good few years now but as a child i didnt really notice, it is only as i have got older that i realised she was suffering - she always seems to have a smile on her face, which humbled me with her braveness! You reminded me of her! She is currently waiting for the treatment CCSVI in Poland - apparently it is not available in the UK yet but if tests are positive they may roll it out here.

    As she says, this could be the beginning of a cure for this disease.

    I appreciate that it is on an individual basis and that the surgery is by no means 100% but
    we have every finger and toe crossed for improvement! She is having the operation in August and she is uploading a lot of videos to show her condition before and after the op. She is rather technically impaired hence why I am contacting you, but she would love to hear from you and your experiences and if you would like to know more about CCSVI please please get in contact.


    Kind regards and best wishes

    Kate

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  118. 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.

    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

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  119. Hi speak as a radiologist the actual procedure itself is relatively quite simple. However the actual evidence presented to support the hypothesis is far from convincing. There does appear to be a relationship between venous insufficiency and neurological condiitons (not only MS) but it appears complex and not a simple proportional one.
    My concern is that based upon generally ancedotal accounts of improvement ( in what is a highly variable condition) people are travelling to have expensive invasive( if in the grand scale of things relatively safe) in countries hundreds of mile away with no adequate follow up. I ve already experience several patients who ve under gone the procedure in Eastern Europe developing thrombosed vessels secondary to the stents.
    My honest advice hold off for now and see how the research comes over the next year. I am really concerned that this may be giving desperate people false hope. And this is coming from someone who would make a ton of money if this hypothesis would be true.

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  120. I ve already experience several patients who ve under gone the procedure in Eastern Europe developing thrombosed vessels secondary to the stents.

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  121. Thanks for sharing a idea....Great post and informative
    CCSVI Cancun

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  122. 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”For more details visit http://ccsviclinic.ca/

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  123. 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 mor details visit http://ccsviclinic.ca/

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  124. 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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  125. http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=player_embedded#t=0s
    http://www.youtube.com/watch?v=BfSOmij8tfk&feature=youtu.be
    Over the past year, CCSVI Clinic and its researchers and specialists have been studying the Combination venoplasty/autologous stem cell infusion protocol developed by Regenetek Cellular Technologies with the collaboration of outside labs and bioproducts manufacturers. As laboratory techniques gain ever-increasing sophistication based on new scientific methodologies for enhancing somatic cells into preferred lineages in vitro, the therapeutic outcomes for patients with neurological disorders have also been improving. Deb O’Connell who was treated at the Clinic in mid-September, 2012 recovered so quickly from her serious long-term degenerative disease condition that she experienced a wave of improvements while still in the hospital.
    It’s a matter of medical record that Deb had been wheelchair bound for 10 years (completely non-ambulatory) with multiple co-morbidities when she entered the program on September 9; she was 9.5 on the EDSS scale as assessed by a neurologist, was down to 80 lbs in body weight, could not breathe effectively, speak, or take in food by mouth due to dysphagia. Her pain was chronic and significant. When she left the Clinic on September 24th , she walked out of the doors and into a waiting van to go to the airport. At the time of her discharge from the Clinic, she could breathe normally, effectively speak once again, eat any types of food she desired and her pain had all but disappeared. At the time of this writing she is back home in Canada and reports that she continues to recover (especially her contractured hands), shows no signs of new disease symptoms, and has gained 18 lbs since her therapies, less than 3 weeks ago. She has now begun a regular physiotherapy program and is gaining walking strength and balance. The recapitulation of the course of her disease (MS) within days, provides evidence that the in vitro requirement of cell pluripotency has correctly been identified with respect to adult cell source origin, time, and manipulation in culture. http://www.ccsviclinic.ca/?p=1084
    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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  126. Thanks for great information you write it very clean. I am very lucky to get this tips from you
    CCSVI Cancun

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  127. Εverything іs νегy open wіth а cleаr clаrifіcation of the challеngeѕ.It waѕ tгuly informatiνe.Your websitе is ѵery usеful.Thаnk yοu for sharing!

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  128. 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/?p=1194 or you may call the toll free number at 888-468-1554 or info@ccsviclinic.com

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  129. Your blog informs and helps a lot of people. Thank you for doing that! Topics about spider vein removal are important topics so keep sharing!

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  130. maggie.danhakl@healthline.comMay 30, 2014 at 9:22 PM

    Hi,

    Healthline just published this infographic outlining Multiple Sclerosis statistics and numbers in a visual guide. You can see the graphic here: http://www.healthline.com/health/multiple-sclerosis/facts-statistics-infographic

    Our users found this info very useful as it showcases MS diagnosis rates (200 new cases a week!) and demographics that are most at risk, and I thought it would be a great resource for your page: http://myhopefuljourneyintoactualmsrecovery.blogspot.com/2009/07/just-facts-about-ccsvi.html

    Please take a look at the guide and consider adding it to your page. The graphic is also embeddable, so you can embed just the images if you choose to do so.

    Thanks again and let me know if you have any questions.

    Best,
    Maggie Danhakl • Assistant Marketing Manager
    p: 415-281-3124 f: 415-281-3199

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
    www.healthline.com | @Healthline | @HealthlineCorp

    About Us: corp.healthline.com

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I've figured out how to get everyone to be able to post on here.