This Is MS Multiple Sclerosis Knowledge & Support Community

On the contrary...it needs to be duplicated...right now it's just Dr. Zamboni's results standing alone.

You could not be more wrong. I doubt Dr. Zamboni's trial will ever be exactly duplicated, but there are trials in the US, Italy, Canada, Bulgaria, India, Kuwait, Jordan, Austrailia, probably many more. Dr. Simka has even published his results.

Please don't help hold this back any longer. Enough reports are in. I have heard drug trials are summarily halted in this type of situation. I like science as much as anybody, but at the cost of my brain?

I think MS patients should hit them where it hurts. In the CRABs. But I am not even taking them myself, haven't for years, couldn't get them because I was SP. I've survived, but I would never tell anybody what meds to take or not. I will myself try to get Liberated, then see if I can lose the Baclofen, etc.

lkafkl,.kj

scorpion

whatever.

I mean no disrespect to those who are posting about when and how and why to be treated, however...

I'm hoping to give this thread a gentle nudge to get back on track a bit to the original question about Dr. Sclafani's patients...

Bestadmom - thanks for posting. It was really important for me to hear the details from you. Thank you.

Ruthless - thanks for expressing what I've been feeling for a few weeks now. Was finally able to put it into words myself over the past few days. I'm also wanting to wait, but am continuing to gather data...

Are there any other patients of Dr. Sclafani who haven't posted in the Tracking thread who'd like to share their details? Good, bad, indifferent, boring! We'd like to hear from you! Thanks!

u r right pegmegrund. Deleting my post.

concerned wrote:The Tracking thread is long and content wise not very encouraging.

I feel for you. And you are right. It is not encouraging. It s the truth.
There are no miracles here unfortunately. Just some efforts to push to a more promising direction by patients for patients.

Take it or leave it my friend. While i understand that money is really an issue here (i had to borrow to have this done myself) i wonder: isnt it always like that?

You seem to be an intelligent person if i may say. I am sure that you know that negativity wont change a thing. At the end, you ll have to make your own mind and find a way to have this done. Simply because there are no alternatives available and no time to lose. Of course, i respect your decision if you dont go down this path but something tells me that you will eventually.

Therefor i can only wish you MY BEST of luck and i hope your mother will have relief of some of her symptoms. I mean it...

1) See this like something that might help somehow where nothing else does and you will be safe from huge letdowns.
2)Remember that while this is a good place for info, the real anwers will come from scientific research. And it will take a bit more of time.
3) Do not pay 25000 k some people pay to have this done in India or wherever. This surgery is a freaking joke especially when we are talking balloon dilation. Personally, i wouldnt pay more than 3000. Where? That s where your real efforts should focus instead of being all sceptic with this.

Hope i didnt offend you. Scepticism is a very good thing as long as it does not consume potentially precious time.

I just posted my 12-week update after CCSVI treatment with Dr. Sclafani: http://www.enjoyingtheride.com/2010/06/ ... entry.html

mshusband-
so, no one is to question our hero? What your post suggests is absolutely frightening.
I thought this was a site to learn ALL aspects of CCSVI, the good AND the bad, precisely so we can decide what to do, and who to do it with. And of all people, Dr Sclafani would more than understand any questions re: problems his patients have encountered--I think he would welcome the questions. He has been honest in his doubts, and for you to demand he not be questioned is an insult to him.

thanks Best admom for your honest post..

And Ruthless67, you express so perfectly what a lot of us are feeling...

No shye ... I'm all for it (after tomorrow when Dr. Sclafani's trial is either accepted or rejected).

It COULD have been though that someone heard about Dr. Sclafani (at some drug company, or some anti-ccsvi person like Colin Rose) and came on here to find dirt. Then would forward it to the directors ...

it doesn't even have to be substantiated dirt ... dirt is dirt. and could put questions into the minds of IRB approvers even if it is unsubstantiated or untrue.

That's all I was suggesting.

mshusband wrote:No shye ... I'm all for it (after tomorrow when Dr. Sclafani's trial is either accepted or rejected).

It COULD have been though that someone heard about Dr. Sclafani (at some drug company, or some anti-ccsvi person like Colin Rose) and came on here to find dirt. Then would forward it to the directors ...

it doesn't even have to be substantiated dirt ... dirt is dirt. and could put questions into the minds of IRB approvers even if it is unsubstantiated or untrue.

That's all I was suggesting.

The first thing I want to say is thank you to mshusband and others that promote going local. Myself, I wont put a lot of faith in any new DR to the procedure unless they have been trained or have really researched the testing procedure. But what it does do is get more and more DRs interested and investigating it and its validity. I had a local DR that was interested enough to do a dopler similar to GT. The tech even was interested enough to call them for help with it. It came back NEG as expected. Yes I am on lists of DRs that now what they are doing. But my point is that the more you mention this to DRs, Nurses, anyone, the faster the word gets out and the faster the process progresses.

Second: Believe me, the people looking into Sclafani have more resources to look into what he is like treating people, his ethics, intelligence, eperience in their personel file than anyone on here could hope to know of him and his medical practices. So I hope that no one hear thinks that what they post is really going to affect the outcome of the IRB. Any medical facility is going to verify any comments regarding patient care before using it to consider their answer. I mean really. Do we think we are dealling with the local high school year book commitee? Do any of us think that a professional medical university is going to take hear say from joe blow off an internet forum that uses smilely faces and avatars into consideration when making a major research decision???? (-:

I didnt mean to offend anyone but I think that we all need to do what we can at our level. For me that is mention it to coworkers, my neighbors, my Drs, my wifes Drs. I sent info to my local TV stations and National Public Radio. Lets stop bickering among ourselves and concentrate at getting the word out and more Drs interested.

We may not have to be completely paranoid...but for one example...there was the Wall Street Journal journalist who interviewed cheerleader for a friendly piece and talked to Dr. Dake off the record...then used what both of them had said in a negatively slanted article. This article was read by the hospital admin where Dr. Sclafani works and resulted in my appointment being canceled, as well as many others, as his procedures were halted immediately to undergo the IRB process.

We may not have to watch what we say here too precisely, but we definitely need to watch it if there's a Wall Street journalist around.

And bestadmom, encouragement: DrS has said that the two likely scenarios for tomorrow were that his proposal would be accepted, with or without tweaks, or sent back for revision for another month...so hopefully the worst that can happen tomorrow is not outright rejection but another month of delay.

BadCopy wrote: Do any of us think that a professional medical university is going to take hear say from joe blow off an internet forum that uses smilely faces and avatars into consideration when making a major research decision???? (-:

I think Facebook is a major resource for anone investigating anything, from a crime to a job application. This forum could be used that way too. The people who form the IRB are local business people who might not have specialized medical knowledge, they are not the admin from the hospital itself. Not sure what resources they have. They are not paid for being on the IRB. They may have many proposals to weed through at a time and many are fluffy or easy rejects. I could see where Dr. Sclafani's proposal, particularly because it involves a vulnerable population (a term I hate, but I get where it applies) might prompt closer scrutiny.

Cece wrote:The people who form the IRB are local business people who might not have specialized medical knowledge, they are not the admin from the hospital itself. Not sure what resources they have. They are not paid for being on the IRB.

I don't think this is correct at all. Where are you getting this information?

Here's the IRB info from SUNY Downstate.

http://research.downstate.edu/irb/irb_member.htm