This Is MS Multiple Sclerosis Knowledge & Support Community

costumenastional wrote:Please, dont even think about giving up. You know CCSVI is true. We cant afford to loose you dear dr Sclafani.....

Yes to the above.

This is all just a beginning, but you are one of the first ones macheting the way for many through the jungle of unknowns, hurt egos, bureaucracy, politics, media and ignorance.

Solutions often come out of nowhere when we are ready to give up.

Did you try to talk to Dr. Siskin? Would he be up for having you work with him?

We need you Doctor. Please rest and come back.

Dr. S, we're partners in this and this is the beginning of the next phase of your career. We are all with you and will support you and we'll follow you anywhere to treat us. ((((Big hug)))).

Dearest Dr. Sclafani,
That is so disappointing to hear about your rejected trial. All I can do is shake my head.

One thought: could you use all you have learned to help educate others who are performing the procedure? I have been in contact with Dr. Siskin's office in Albany, NY, and I believe that they could definitely learn some things from you. Please consider collaborating with them and sharing what you have learned. They are valiantly pressing ahead with treatment outside of an IRB.

My husband is (I think because we called the first week in March) on the top of Dr. Sclafani's list. Why does this have to be so difficult? This is my husband's only hope because the Tysabri doesn't seem to be working anymore. We just came back from his neurologist appt and infusion and I was hoping for a positive outcome when I came to the forum today. I am so sad that I could cry.

OH BROTHER


Dr. Sclafani, have you talked to the folks at the Hubbard Foundation? As far as I can tell from here, it looks like they have IRB approval.

There has to be something that can be done somehow, your invaluable experience and knowledge are needed on this project.

*SIGH*

drsclafani wrote:they have not treated any patients. they will count those cases toward a randomized prospective trial. i wonder how that will imparct results

Dr. Sclafani, if you will get a fund set up, we can start fund-raising for you. I do not know any one person able to fund an entire site for you but I know of thousands of people who might fund small amounts that add up.

And I am really sad but you know we all have enormous trust and faith in you and if it's possible, you'll make this happen, and if it's impossible, no one can ask that of you.

I get too that you need to do this under IRB approval because that's what journals require for published results. And published results are what's going to convince other doctors. Okay, still really sad.

edited out: some comments on bnac's study that now seem a little extreme

I'm so sad to hear this news... OK - yes, that's a mad face too.

Have you made contact with Dr. David Hubbard at The Hubbard Foundation in San Diego? It is my understanding that they are doing the testing at their facility and then will soon be referring out to several docs to do the procedure... I realize that it is opposite sides of the country... but, who knows?

I am so sorry Dr S for you and all of us:(

Maybe you need to play the game and suggest the MSers you treat need to be on the DMD's maybe specify copaxone and ask for funding from Teva!!

Dr. Sclafani,

We will all do everything we can...

I am able to help on point #5 -- Funding:

When you can start accepting donations, my brother, Jim Horton, would enjoy helping your study by giving his professional police presentations at CCSVI fund-raising and awareness events in NYC. Let me know!

A question for everyone:
Is BNAC charging their treatment study participants? I ask because I know they're charging self-referred MSers for CCSVI tests.

Very disheartening. Figured the German study would be misused far and wide, can't argue the science of it when politics come first.

This smacks of NIMBY.

Cece wrote:

drsclafani wrote:they have not treated any patients. they will count those cases toward a randomized prospective trial. i wonder how that will imparct results

You are right, they are totally inexperienced, and we know there's a learning curve. And it's an extremely small sample size. And it's ridiculously important to get this right and proven and they're risking mucking that up.

Dr. Sclafani, if you will get a fund set up, we can start fund-raising for you. I do not know any one person able to fund an entire site for you but I know of thousands of people who might fund small amounts that add up.

I have $1,000 for you.

I know it's not much, but I am serious ...

If you need equipment or to find a place, and what not ... I'm glad to start off the donations.

I am flabbergasted. Why can't intelligent human beings realize the urgency and potential of this procedure?? Don't they realize by not having well trained people do this, they are putting patients at risk of having the procedure done badly by someone else.?

Have you seen the open letter from the Doc in Belgium in response to the BS from an obscure dutch study??? It is on here somewhere, but I am not clever enough to link it.

Is there anything we can do? Write letters? maybe try to get the MS society behind you doing the work? it seems like insurance will cover most of it?

Too many questions to answer, I know. But I just had to write them down. Maybe if the procedure works miracles for Barb Farrell the floodgates will open. Sigh

Ann

It angers me that one of the reasons the IRB gave is that people must pay for the procedure. Good golly I could have my teeth replaced with diamonds and pay for it... I could have my whole body tattooed and pay for it. I could have my face lifted or get a nose job and pay for it. So why is it a crime for me to have CCSVI angioplasty if I am willing to pay for it ?? Dr Sclafani, you have my total support. In this whole CCSVI story you have been a beacon of light. What other doctor has talked with us like you have ? What is life without hope ?

ozarkcanoer

stupid IRB...stupid silly Germans or better the ones who did this super stupid study ...embarassing to be German...but this will not be the end of the story, I am so damm positive about that....and please do not assume that all german doctors are such idiots....I so much hope for you Dottore that eventually you will find a place where you can continue to a fantastic and great job as to really help people sufferingfrom MS....good good luck and all the best from germany, Bavaria

OK ... since this page is getting so many views right now ...

ONE MORE TIME.

IF YOU DON'T THINK THAT PEOPLE READ THESE BLOGS WHO ARE ANTI-CCSVI FOR WHATEVER REASON (DRUG COMPANIES, OTHER DOCTORS, ETC) ... WELL THEN YOU'RE NUTS.

We've seen doctors get shut down.
We've seen posts slamming doctors for doing this not in a trial.
We've seen posts saying this is nonsense.

We've seen it all.

IF you know of a doctor, PASS IT ALONG TO THOSE YOU TRUST PRIVATELY.

Remember when someone new came on here a few weeks ago asking for information about Dr. Sclafani ... and guess how much that person has posted since ... ZERO TIMES.

If you think that's a coincidence, well then I guess you're more forgiving than I am.

How much do we really know about people out there? Even if they post here a lot? We know who the anti-CCSVI ones are ... we need to watch what we say ... who we say it to.

I'm all for helping people get treatment, but it's going to go through back channels instead of wide open on the internet for anyone in the world to see.

PLEASE, ALL ... DO THE SAME.

We don't want to risk losing doctors like Dr. Sclafani, Dr. Bonn, the Dr. in Florida, Dr.s in Canada ...

If you don't see it by now ... like I said. My mom works in the medical community, if you don't think drug companies and other doctors are looking at this and trying to figure out ways to beat CCSVI back ... you need to look further.