This Is MS Multiple Sclerosis Community: Knowledge & Support

This is not cool. Please stop. Watch the new video at www.ccsvi.org and learn why patients need to "go local" and work with doctors who can follow them. BTW, I don't have MS. My husband does,
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheer,

The so called "science" is moving at a glacial pace. Our scientific methodology is in dire need of overhaul.

And getting ANY attention close to home ain't happening for now. Welcome to do-it-yourself e-medicine. Take a bow, TiMS.

PN

Interesting. I wonder if it means that, like Dr. Sclafani has mentioned, and like the reduced TIMS traffic would indicate, that interest in CCSVI treatment has plateaued and is now declining. Places offering it are now actively looking for patients to treat. Like Synergy's cross-Canada medical advertising "information" tour.

We certainly don't see a growing groundswell in momentum and voices that you would expect to see as more and more people have been treated and could add their experience and strength to the cause if they had positive results.

Instead, as more people have spent large amounts of money and been treated, interest and testimonials have dropped off considerably.

Most pwMS (with the potential exception of Canadians) have no idea what CCSVI is, eric. We've had more hits on Facebook and at CCSVI Alliance since Montel made his announcement, and I assume the Dr. Oz show will continue interest in the states. But people in North America are heeding the doctors' advice and not traveling to Poland, Egypt or Bulgaria, but remaining on this continent for testing and treatment, and participating in clinical trials- which would explain a Polish center fishing for clients thru PMs.

My comment was made to the Polish site that PM'd me. I wanted them to know it's not cool to look for clients on a patient/caretaker forum. That's all.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

It is very expensive, especially when so many need repeat treatments. I think people are a bit more cautious, money is tight and results are so varied and too often transient. People can only go into to debt so far.

We are in the hole from my first time and the next round is my last chance unless insurance starts paying some. We'll just be too far in debt to try anything else. I think if there were consistent lasting good results, people would find the money right now but we're not there yet. In the beginning I think many people thought it was a one-time fix. Maybe if Montel has a good story, it will change things--at least it will be in public awareness.

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There's a certain personality type that's willing to go for a new procedure early in the discovery process (and other personality types that sure as heck wouldn't).

I think there was such high demand one year ago because there were so few providers. Now, there are many providers which has taken the edge off of things.

Lyon, we are in agreement about Dr. Sclafani's qualifications.

At the same time we have Dr. Arata posting this week that he is treating 20 patients per week. Those are high numbers.

I have heard that some U.S. clinics have 75%-90% Canadian patients. Canadians are self-paying. The procedure cost can range from $6,000 to $10,000 depending on the provider. In my opinion it is worth paying more to get the best care, but I also have an opinion on who is providing the best care.

There are people who sell their houses to get this procedure; I just heard this mentioned again on Facebook this week. It was by someone who excited to get the procedure but had to get her house sold first to pay for it.

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It's only a guess. I can't understand it either.

I'd beg or borrow, but not steal....

Unless it was medication that would save my dying husband but some pharma company priced it at $1 million even though it only cost them $5 and I was dimly aware that I was part of some Heinz dilemma ethical test.

any - if at all - diminished interest in CCSVI ..... will be a result caused by changes within Health Insurance coverage .

anyone contemplating taking serious financial steps in order to obtain treatment ........ please ......... DO NOT DO THIS ........ DO NOT sell your home ........ DO NOT borrow large amounts of money .......

Mr. Success is of the belief that we are ........ )( ........ this close to getting the procedure accepted as a treatment for MS symptoms , paid for and performed in a hospital or clinic ........ as you would a broken limb.

So close .......... so close ......... so very close..........


Mr.Success

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hold on, i never said that there was less interest, i said that there was a misconception that i am overbooked. That perception is based upon many factors, the greatest of which are the noteriety of being shut down by someone who read the Wall street journal instsead of the new england journal, by a scheduling coordinator who decided not to answer 90% of the requests, and other misunderstandings like: "he is part of the PI group, isnt he?"; " i would love to go to you but i cant wait a whoe year", or "you were shut down again", to "he is just too busy for more patients".

Blue Cross Blue shield of New York's decision to not recognize the procedure didnt help either.


one could argue that it is just a lack of marketing or a slick website, or going on a tour of the country side.

i just chose to stay here and write a lot of answers and put together a couple of international meetings, and join and develop a new network of physicians who are treating.


Any way, i am sure that we are developing traction and that ccsvi is going to be mainstream in 12-18 months

That is part of what - to me - makes you such a rare and precious physician, and human being.

Having been treated by you (and doing quite well, thank you very much), I would choose you again over some greenhorn in the mainstream - should the need arise. Your use of IVUS is precious, in my opinion, as is your diligence and compassion. If I had a house, I woud mortgage it (not to be costrued as medical or financial advice!).

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My name is not really Johnson. MSed up since 1993

It's only been 18 months since I first heard about CCVSI. It could not have been farther from mainstream at that time. It is encouraging to hear about gaining traction!

how did you even find this discussion! I am embarrassed.

poor cece
there is nothing here that should embarrass you.

who should be embarrassed is the subject of cheer's original post. If you read under the nyc ccsvi symposium thread you will see that dr ludyga group is writing that he is hosting that meeting and that patients should go to him to learn from all the great things that they have done in Katowice.

i am dumbounded. While I invited his partner, marian simpka, to participate, dr ludyga is not on the faculty, is not lecturing and sure as hell is not hosting my meeting!

i am furious, seriously pissed and generally in a rage over this fundamental dishonesty and manipulation at a patient day that focuses on and rejoices the patient.

I wanted all to know that there is no truth to any of this nonsense about ludyga the host, i would rather have Caspar the friendly ghost.