Comments on Wheelchair Kamikaze: CCSVI, Already a Success...

I was diagnosed with Multiple Sclerosis back in 19...

2010-11-08T12:02:58.429-05:00

I was diagnosed with Multiple Sclerosis back in 1983. I can hardly walk now and it seems my condition worsens every day. When I first heard about the Liberation procedure and its results from a friend, I thought United States would be the first to conduct the trials. I could never imagine the corruption involved. I ended up applying for this simple procedure in Poland and waiting.. The other options were to get it done in India. After researching the internet extensively, I came across http://www.ccsviclinic.ca/ . They are screening for CCSVI in Fargo, ND and have very affordable packages for the Liberation procedure in India. I called (404)461-9560 and spoke to their nurse administrator Lisa whose priceless support made me realize that we are not alone in the fight against MS. They are screening within the US and Canada, their medical travel package includes flight arrangements and help with the visas, world class accommodation and meals within their hospitals, the liberation procedure, a stent if needed, medications necessary, a site-seeing tour, Pre-and post-procedure supervision, Full medical file including copies of charts, screens, CDs of Venograms, blood work, EKGs, etc. Post Procedure Screenings, follow-up and consultation with surgeons for the next 6 months and so many other provisions Lisa told me about, I can’t recall however you might be able to find out more on their site.. http://ccsviclinic.ca/?page_id=564 . They are providing all of this at just $13000 as compared to the other companies that charge something like $20000 just for the procedure. You may also contact Lisa by emailing her at apply@ccsviclinic.ca or calling her on (404)461-9560. I am getting liberated mid- November and I am so very thankful to everyone at CCSVI Clinic for making this happen!

I have put my name on many lists all over the worl...

2010-09-19T21:10:40.039-04:00

I have put my name on many lists all over the world. I am waiting for feedback, I would do anything to speed the process up. Whether it worksor not I think its worth a shot and I have nothing to lose.Does anyone out there know a place preferably in the U.S where the procedure is being done with a reasonable wait time.

I am wanting to know where this procedure is being...

2010-07-12T11:30:05.641-04:00

I am wanting to know where this procedure is being performed. I have emailed all over and have not heard back. I would like to pay for this treatment and I can't seem to find anyone that is performing it.
Can anyone out there help with locations and or emails
Thanks

Scott Johnson phoned me and I suggested he get an ...

2010-04-17T00:17:13.408-04:00

Scott Johnson phoned me and I suggested he get an MRV and I would pay for it. He refused. I am trying to get Domincan Hospital in Santa Cruz to set up a CCSVI facility and I have offered them $25,000 if they would connect with Stanford and perhaps get Michael Dake or a trainee with him to come to Santa Cruz maybe once a week to do it here so my wife doesn't have to be driven to Stanford where she is in the program there. Scott Johnson, you are closer to STanford than I am, and how about helping me set a program up at Dominican, then after the cause is eliminated, we can fix the myelin. I will then contribute to your foundation. Will you please print this and let's get some move on. I'm in the Santa Cruz phone book if anyone wants to call me. I believe the resistance to the this procedure is a form of mal-practice. Who wouldn't want to get occluded arteries opened. On the national forum a couple of days ago the interventional radiologist said the procedure was straighforward and simple. Please, Mr. Johnson, join me in getting this to a local institution so people don't have to go to Toyota to get this procedure. Very truly yours, Louis Bartfield

Nice to see action on this!May they finally get th...

2010-03-22T15:46:12.034-04:00

Nice to see action on this!May they finally get this right for all!You really have the most interesting M.S. website.Thank you for keeping us posted.

I am a self-respecting American who is married to ...

2010-03-20T13:00:07.543-04:00

I am a self-respecting American who is married to an Italian and has lived in Italy for 30 years. The whole CCSVI thing is shameful as both drug companies (ALL of them) and neurologists (95% of them) won't even admit that it MAY be a real hope in at least blocking MS. They are too panicked that their meal ticket (we, who suffer from MS) may be reduced. Vaffanculo !!!

marc, i love the way you framed CCSVI as already a...

2010-02-21T23:08:50.777-05:00

marc, i love the way you framed CCSVI as already a success, and the reasons why. right on. you are also absolutely right about the current available drugs and where they fall short - i think many people don't realize the immune suppressant aspect, which is a primary reason why one should think twice about taking them (and of course the poor efficacy rates). great post, thank you!

Just want to thank everybody for their intelligent...

2010-02-20T21:24:19.793-05:00

Just want to thank everybody for their intelligent, well-thought-out posts. I'd love to reply to each of you individually, but that might take all day, so I'll try to touch on a few points.

For those of you looking for places to donate, I recommend, as others have, the Myelin Repair Foundation, as well as the Accelerated Cure Project. If you're looking for ways to volunteer your time to the CCSVI cause, you might want to contact the BNAC at http://msterypartyccsvi.bnac.net/, as the folks who are running the Buffalo study need people to organize local fund-raising parties so that the research can continue.

I share the sense of frustration that many of you have expressed, but it's important to keep in mind that CCSVI is still unproven, and as the Buffalo study showed, it likely plays a large role in the MS picture, but is not the magic bullet for all patients.

Also, remember that all of the procedures being used to treat CCSVI are currently experimental, and not without risk. Believe me, I understand that doing nothing is also not without risk, but it's important to enter largely unknown territory with eyes wide open.

I believe CCSVI is a big step forward, not only for patients, but hopefully also for researchers, who perhaps now the widen their field of view and look beyond autoimmunity.

@Anonymous (Feb 16, 3:38 pm) - To be fair, regar...

2010-02-18T22:08:49.151-05:00

@Anonymous (Feb 16, 3:38 pm) -

To be fair, regarding your comments on "if we were having a stroke," angioplasty and/or stenting for critical carotid artery stenosis - which is what you are referring to - had to go through the same studies and trials.

In the early days of stroke prevention, a large number of extremely unfortunate patients suffered from additional strokes far more severe than their original (usually minor) stroke, simply due to inexperience and poor technique. It took a *long* time before stents and angioplasty were safe medical procedures, and not just as likely to kill you as leaving things alone.

As a disclaimer, I'm a vascular sonographer (in the stroke unit) at a public hospital.

The Myelin Repair Foundation is where I donate! T...

2010-02-18T13:25:49.885-05:00

The Myelin Repair Foundation is where I donate! The CEO and founder has MS and is passionate about a cure. I'm excited about CCSVI and anything that can repair the damage w/out harmful side effects. Praying that ethics overpower financial interests.

thnx for the updates

2010-02-18T12:00:50.844-05:00

thnx for the updates

This is a fantastic blog, and I know Marc is alway...

2010-02-16T16:53:14.632-05:00

This is a fantastic blog, and I know Marc is always up to date with what is going on.

I am currently on the Copaxone, and wonder every day if there is something going on still in my c-spine and brain that the Copaxone is not slowing down ...

I can not imagine sitting back and "letting" it take my life, and just live with the changes as I have experienced the last 4 years..

We need SOMETHING to hold on to....

HOPE

I look at facebook ccsvi ms and also the website t...

2010-02-16T15:38:43.147-05:00

I look at facebook ccsvi ms and also the website thisisms.com and your blog etc. When I read through the posts tears come to my eyes and I am filled with grief. I have had MS since 2004. I lost the use of my hands and had to sell my business. Since then even when I thought things were going well, MS was quietly attacking my brain and spine with new lesions. Most days I feel like I have no control over my life. I am afraid to plan a vacation because I never know if my body will cooperate. I know many have MS much worse than myself and that is why I completly understand the urgency to do something. Everyday we wait is a day where damage can be done to our brain and spine. If our doc's thought we were having a stroke they would take action to avoid permanent damage. Yet no action can be taken for an MS patient until studies can be done to see if angioplasty is safe? Seems to me that the people who are stable are okay with waiting for blinded studies etc. Those of us who are desperate (and that is what it comes down to)to hold onto our lives and our independence cannot afford to wait. Where has human compassion gone?

As Always Marc, You have a flair for writing and a...

2010-02-16T11:16:33.432-05:00

As Always Marc, You have a flair for writing and a way with words.
Yes of course, I will post this to my blog and Yes, I will ask you to have all your faithful readers, register at my website so they can get the weekly benefits of my ms e-newsletter that you receive each Thursday.

Yes, WE ARE GLOBAL. From ANYWHERE in the World - If, You are affected By Multiple Sclerosis as either the patient, a caregiver or a friend, and want to remain up to date with ms information, then please register at this website: http://www.msviewsandnews.org - to receive our weekly MS related, e-Newsletter. - thank you

I was just ranting today to DH about how we are tr...

2010-02-14T23:12:59.215-05:00

I was just ranting today to DH about how we are treated like the red-headed stepchildren of even the disease world. The drastic differences in numbers from the various early studies has certainly put me in "wait and see" mode - where I think we should all be until some solid research results come out. Easier said than done in a disease where time is a sworn enemy, though.

Brilliant writing!! Thank you from Vancouver BC Ca...

2010-02-14T01:35:31.024-05:00

Brilliant writing!! Thank you from Vancouver BC Canada!!

There are two camps. Those of us who suffer or car...

2010-02-14T01:20:53.970-05:00

There are two camps. Those of us who suffer or care for someone who suffers with MS and those that do not suffer from MS but live off our suffering by selling us treatment, medicines, advocacy etc. Let me rephrase their message about CCSVI and the Liberation treatment " we demand and insist that you continue to live in misery, continue to wear diapers, see double and continue to be a burden on others until we decide that it is now safe and allowable for you to try the Liberation treatment. Shut up and get back in your wheelchair!". None of them look upon themselves as professional leeches but they know that their professional future and all the drug company provided freebies are in serious jeopardy. What will happen to this army of professional caregivers if 50% of MS patients return to normal life? Once we understand the political dynamics it is easier to understand the their laud and shrill logic behind "caution, more studies, proof, placebo effect" etc. A simple angioplasty type treatment to restore normal blood flow has little or no down side. Why should even healthy people walk around with blocked veins? While it is important to learn why and how the Liberation treatment works, the more important thing is to provide relief NOW for those whose life is a misery. Delay is immoral, inhumane, self serving and runs against all human decency. We need to unite and face down the MS establishment. No self respecting American should put of with this nonsense. Let me know if you are with me. simonyigindele@yahoo.com

Help, I really want to volunteer my talents and ti...

2010-02-13T23:13:53.751-05:00

Help, I really want to volunteer my talents and time (as limited as it is) to the CCSVI movement but don't know how to do it, and I'm not gonna call to the MS Society as I have done in the past!
Oh, P.S. AWESOME BLOG!!!

First step, find the cause of the disease. Second...

2010-02-13T19:24:57.215-05:00

First step, find the cause of the disease. Second step, repair the damage. The Myelin Repair Foundation is where my money would go.
www.myelinrepair.org
These people are fantastic and you can subscribe to their newsletter that is chalk full of information. (I have no personal affiliation, I've just found them helpful.)

Marc, your posts are awesome!. As are the photos. ...

2010-02-13T17:59:34.692-05:00

Marc, your posts are awesome!. As are the photos. Thank You for using your estimable talents to help us MSers.

@Ann, Your comment serves as a model for others. CCSVI will rise or fail on its own merits, but there is enough there already to merit accelerated-large-scale clinical trials. Pushing the good news is a great way for patients to be active in the process.

@mad sow, I believe stem cell research will likely be an important aid in healing our old lesions. We're just not quite there yet. Again, the way forward is participation in blinded clinical trials. And responding to real results like the Buffalo study. Charlatans will always be out there to take advantage, so beware, learn all you can and make your choice when and where to jump.

I bet we'll see a lot of centers open up to treat CCSVI. The best ones will do peer reviewed clinical trials. For patients whose lives are crumbling because of MS, they will make the calculus, as they are entitled to do, that finding a qualified interventional radiologist willing to treat them ASAP is the right thing for them. I wish them the best and will be right behind them, after we learn a bit more about the best protocols from the clinical trials.
cope and hope.

Here in Norway, I am trying my best to get my/our ...

2010-02-13T16:22:52.308-05:00

Here in Norway, I am trying my best to get my/our voices heard about CCSVI. This past week, I sent (what I hoped was) a convincing appeal to the national public broadcasting network, NRK as to why they should cover this very important potential breakthrough. NRK is a public-sponsored, highly credible news source in Norway and I believe that their coverage of CCSVI would go a long way to getting notice from both patients and the health sector.

Up to now, a few neurologists here have reacted to the concept of CCSVI with extremely cautious optimism, while at the same time trying to poke holes in Dr. Zamboni’s research methods. The medical community is saying that they currently have no intention of doing further research on CCSVI or to offer testing for ms patients. Of course they are strongly advising us to have patience and not travel to Poland for treatment.

The good news is that I managed to get my appeal to the right contact at NRK who promised to send the information to the staff at the NRK TV program “Puls” (a weekly health magazine). Yesterday, I was called by one of the Puls reporters to get additional information. Where the story goes from here is anyone’s guess, but it looks quite positive.

I’ll keep you posted.

Ann

Thanks Marc - great coverage as always. However, ...

2010-02-13T10:26:18.556-05:00

Thanks Marc - great coverage as always. However, I remain a teensy bit cynical. In November, our local MS Society was mobbed by people demanding that they be allowed to have stem cell treatment, people were flying all over the globe for it, people started blogs about their amazing recoveries. Nary a month later the frenzy started for CCSVI. I agree with the need for MSers to be educated and to advocate for their treatment (god knows no one else is as good at it as we are), but we aren't going to get a push button cure for this disease and we need to stop acting like birds chasing the next shiny thing if we are to be taken seriously. There is hope both in the stem cell approach and the CCSVI approach - both need way more study. I'm still curious about the male/female differences in MS, the differences in incidence by latitude, etc. I feel there is more to this than one thing. That said, I'm encouraged there is another line of research opening up.
and I hasten to say I like birds...

Marc, Great post as always. I don't think I c...

2010-02-13T09:46:50.345-05:00

Marc,
Great post as always. I don't think I can add anything because you expounded on all your points better than anyone could do! Thank you for this.

Marc, your site has become my one stop shop for my...

2010-02-13T09:34:05.259-05:00

Marc, your site has become my one stop shop for my daily MS updates! The only other daily research is following the news of what the pharmas are rushing to implement (..."New Diagnostic Criteria for MS Published", Medscape Medical News, 2010-02-12, etc). Instead of forwarding my daily research to my medical community in Minnesota, I sent them your link! Any suggestions of where to send a donations?

Your research, writings, and photos have given me energy and new hope for a very different future than I had imagined. Thank you.

DH (a Non-MSer) and I did something we seldom do. ...

2010-02-13T09:28:52.009-05:00

DH (a Non-MSer) and I did something we seldom do. I made him vote on his work computer for Marc's blog (yah Marc, go Marc!!!) and he heard about CVCSVI for first time, remarking US news never talked about it, so it must be another MS flash in the pan. I said I wasn't paranoid or a conpiracy believer but wasn't it odd that..... Oh no he said, the media wouldn't do that but conceded Networks might. We ended in a deadlock. I hope something comes of this. My kids are going off to college soon, with only one ard I'll never be trusted to babysit alone one day.....
kicker