This Is MS Multiple Sclerosis Community: Knowledge & Support

[Timhuskyfan]

I am ever so impressed with your thought process and ability to stay on target with your message of staying with good science, and pushing for local treatment. I agree with you 100%.

Not sure what the other 40% says though (lol)!

Congrats again on your being positive for CCSVI. Good luck next week!

[Billmeik]

I totally support bnac for looking into ccsvi. I only hope they are wrong in their low numbers, I don't know.
Im not going to say 'good going' to 60...It says 'we know better' and I don't think they do.

[ozarkcanoer]

Thanks Tim ! My appointment next week is a big unknown. I will keep you all posted.

ozarkcanoer

[bestadmom]

A venogram costs about 10,000 in US.

Where? You could PM me if you don't want it public. $10K is bargain basement pricing.

I heard from someone who had the procedure done in New York that they were charged $15K, to their insurance company.

Was that just for a venogram? Or did include treatment also?

Donnchadh

I was Dr. Sclafani's first patient and the bill to my insurance for diagnostics and treatment, which included a precautionary hospital stay, was $13,500. I paid nothing out of pocket. Dr Sclafani didn't get paid seperately.

[Billmeik]

People with mild MS do not go to Poland or Bulgaria or Stanford for treatment but they stay at home and wait for the science to play out. People who can't afford the treatment do not take these routes either and many of them are severely disabled and wouldn't go to Poland. There are no controls among the patients. If BNAC found 20% of controls have CCSVI then maybe that is good information. It isn't clear what the distribution of people are in BNAC's 58% (or is it 62%) OR in the 40%.

I am ready to run out and be liberated as much as anybody but don't say BNAC is doing sloppy research because YOU DON'T KNOW. Dr Zivadinov is going out on a limb and risking his reputation in order to study CCSVI. If he doesn't give you the results you want that's your problem. I support BNAC 100% !!! Who else is doing double blinded CCSVI studies ?

this is pretty offensive to me a person with mild ms . I think its nice how bound by convention you are and parroting the word from conservative doctors, but don't impose that on me. Don't tell me I need 2 numb hands rather than one to do things right. Buffalo needs to be challenged because their replication of zamboni is poor and they think because they have more expensive gear that's ok.

Really it's not ok. They have degraded the effort made all over the world by other docs. I think the numbers will be higher in the next 500 and that proves even more how out of line it is to publish 60.

I was thinking of a metaphor: You invent a new health food and it is a hit in small restaurants around town. Then McDonalds starts offering it, but they add sugar and make it way less healthy. Now you are asked to make a statement on this. " Mcdonalds is offering my health food' you say. "But is theirs the best?"the reporter asks." Mcdonalds is offering my health food' you respond. that's all you can say.
"Big automated and worthless" you mutter under your breath.

[Billmeik]

copy

[Rokkit]

Really it's not ok. They have degraded the effort made all over the world by other docs. I think the numbers will be higher in the next 500 and that proves even more how out of line it is to publish 60.

They haven't actually published anything yet. One possible explanation is that they've come to realize that with different equipment and more experience, their numbers will be higher, so they're hesitant to publish the first 500 without the second 500. Alternatively, the reason they're somewhat late to publish could be something else much less dramatic.

[Cece]

There is a lot of bias in Dr Simka's patients and in Dr Sclafani's patients and in Dr Dake's patients. Goodness gracious I love all three of these brave doctors so this is NOT a slam against them. In all three of these cases the patients selected and elected to have the procedure and the physician knew they had MS ! People with mild MS do not go to Poland or Bulgaria or Stanford for treatment but they stay at home and wait for the science to play out. People who can't afford the treatment do not take these routes either and many of them are severely disabled and wouldn't go to Poland. There are no controls among the patients. If BNAC found 20% of controls have CCSVI then maybe that is good information. It isn't clear what the distribution of people are in BNAC's 58% (or is it 62%) OR in the 40%.

I am ready to run out and be liberated as much as anybody but don't say BNAC is doing sloppy research because YOU DON'T KNOW. Dr Zivadinov is going out on a limb and risking his reputation in order to study CCSVI. If he doesn't give you the results you want that's your problem. I support BNAC 100% !!! Who else is doing double blinded CCSVI studies ?

ozarkcanoer

I also have mild m.s., I also am self-selecting to go into Dr. Scalfani's study. I think you make a point: the worse someone's m.s. is, the more likely they are to pursue all this. I also made a point a few months back, that we're all self-selecting ourselves into this because the CCSVI theory rings true to us. I know for me it was: Eureka! Yes, I've had extremely cold feet and hands all my life! Yes, I've questioned my MS diagnosis because it didn't really explain why I had issues even as a child or why relapses happened when they did or why my symptoms fluctuate throughout a day, in the heat, after an argument, etc.! So, just as there are people like me shouting Eureka and jumping in, there might be other people opting out because none of this rings true to them, so yeah, that will change the make-up of the patients.

To defend Dr. Scalfani's study, it is a safety study. I don't think who has self-selected in or out will make too much of a difference in the determination of whether or not minimally invasive percutaneous venoplasty of the jugulars and azygous is safe or not.

(edited out a response to something Billmeik edited out... )

[ozarkcanoer]

Golly gee, I am not trying to offend anyone here !! Calling Dr Zivadinov's research substandard is offensive to me !! I went to BNAC and I saw their research facilities !! I'm also not saying that mild MS is OK for anybody. I have mild MS. I have double vision, fatigue and severe headaches. No sensory/motor problems below the neck. What I want is for EVERYBODY to be helped regardless of their ability to go to Poland or Bulgaria or India etc etc. And the only way that is going to happen is if CCSVI is shown by blinded trials like BNAC's to be truly associated with MS and if it is then JUST EXACTLY HOW AND WHY !!! There are many many people who are on disability who can't be treated. I want them to be treated. For that to happen then medicare and medicaid (in the USA) need to recognize this as a true connection. There seems to be a similar problem in Canada and in the UK. There will be no broad acceptance until the science plays out.

ozarkcanoer

[mangio]

Amen Ozarkcanoer.

[Brightspot]

For venogram / balloon venoplasty cost see the May 11th testimony by Dr. Sandy McDonald to the Canadain Parlaimentary sub committee on neurological health.

He is the vacular specialist who has done the procedure for about 6 people in Ontario, Canada before being forced to stop. You will see his comments which indicate he beleives persons with MS should have access to screening and treatment within our publicly funded system. He beleives that these simple, safe diagnostics and balloon treatments are already insured services in Canada and that persons with MS are being inappropriately denied these services.

(In British Columbia, a human rights complaint is being filed on that basis.)

I understand if billed throught the existing publicly funded Canadian medical system the cost to the system was estimated to be around 1500 dollars.

It would be billed to the system in the same way angiogram and balloon angioplasty (or venogram / balloon venoplansty if you prefer) to any other vein in the body is billed. (in Canada this means no charge to the Canadian patient).

He suggests that the cost to the system for angiogram / balloon angioplasty is about 1500 dollars.

Here is the link

http://www2.parl.gc.ca/HousePublication ... l=40&Ses=3

[MrSuccess]

Is it just me or is everyone else having trouble understanding the posts regarding the Buffalo study and it's results.

What is so hard to understand ?

Two extremely bright young medical professionals - Dr.Z & Dr. B-W - accepted the challenge of Dr. Zamboni to try to duplicate his theory that pwMS also exhibit stenosis in their veins that drain blood from the head... back into the heart.

These brilliant young doctors did a study using diagnostic equipment only.

In spite of the limitations put on them - limited funding - different diagnostic equipment - and other roadblocks .... they discovered that about 60 % of those they tested for CCSVI ......HAD CCSVI

Had they FULL funding .....and approval ....to apply Dr. Zamboni's intervention procedure ..... I am confident the Buffalo investigators would have produced even higher numericals .

And ... oh yeah .... a hell of a lot of pwMS feeling better .



People . Read the FULL story . It is amazing . Truly amazing .



The work of the Buffalo professionals has just begun . Let's support them here at TIMS .





Mr. Success





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[MrSuccess]

Brightspot - Dr. Sandy McDonald performed the CCSVI intervention on those lucky ducks .... as he said ....'' on my own dime ''.

Mr. Success

[Brightspot]

MrSuccess

Dr. McDonald also estimated, for the standing committee, the cost of the procedure if billed to the existing pulicly funded system .

Check out the testimony for yourself...1500 bucks.

[MrSuccess]

Brightspot - I'll take your word on the $ 1500 . Seems reasonable to me.

I was very impressed that Dr. McDonald would spend his own time and money to investigate CCSVI . How can you top that ?




Mr. Success