DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby costumenastional » Tue Jun 22, 2010 11:01 am

HOW THE HELL SHALL WE GATHER EVIDENCE IN FAVOR OR AGAINST CCSVI IF THE BEST SCIENTISTS IN THE FIELD GET SHUT DOWN?
SHOULD MS PATIENTS GET LIBERATED IN SECRET DUNGEONS?????
ARE WE ANY SERIOUS???????????????????????????????????????????????

This ruined my already ruined day.
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Postby Johnson » Tue Jun 22, 2010 11:03 am

Doc. Sclafani,

I am sorry.
My name is not really Johnson. MSed up since 1993
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Postby bestadmom » Tue Jun 22, 2010 11:04 am

...just like the days of coat hanger abortions. Things will change.
Last edited by bestadmom on Tue Jun 22, 2010 11:07 am, edited 1 time in total.
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Postby mrhodes40 » Tue Jun 22, 2010 11:07 am

Dr Sclafani,
I am so sorry. I am so so sorry. Please take some time and breathe something will open up... It is unbelievable.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby ErikaSlovakia » Tue Jun 22, 2010 11:08 am

Doc. Sclafani, do not give up, please!
Time will show us some solution. We just do not see it right now.

This is very sad situation :(
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby costumenastional » Tue Jun 22, 2010 11:11 am

drsclafani wrote:AMONG THE ISSUES THAT WERE RAISED AGSINST MY PROPOSAL WERE

1. AN OBSCURE GERMAN ABSTRACT REPORTING TEN PATIENTS THAT SHOWED NO ASSOCIATION BETWEEN CCSVI AND MS
2. A NEWLETTER OF SOME FORM STATING THAT ONLY RANDOMIZED TRIALS SHOULD BE PERFORMED.
3. THAT RANDOMIZED CONTROLLED STUDIES WERE ALREADY UNDERWAY IN BUFFALO. ANYONE KNOW ABOUT THAT?
4. THAT THE NATIONAL MS SOCIETY RECOMMENDED AGAINST TREATMENTS
5. THAT PATIENTS WERE BEING CHARGED FOR PROCEDURES. AND I HAD NO FUNDING
6. AND OF COURSE, THE WALL STREET JOUIRNAL TALKING ABOUT DAKES COMPLICATION AND DEATH



all these sum up as the definition of the "searching for excuses" phrase.
dont be sorry, doctor. we all know better than this. we wont loose this fight, simply cause we cant afford to.
stay cool, as always. we ll get over this somehow.
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Postby girl69 » Tue Jun 22, 2010 11:12 am

This is a scandal :( How can they do this !?!? Please don't give up, one can't imagine that things won't eventually evolve towards reason and common sense, so sad that the way there is so hard...
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Postby AlmostClever » Tue Jun 22, 2010 11:13 am

girlgeek33 wrote:
Cece wrote:
drsclafani wrote:3. THAT RANDOMIZED CONTROLLED STUDIES WERE ALREADY UNDERWAY IN BUFFALO. ANYONE KNOW ABOUT THAT?


It's a small study of 30 patients. First ten are getting the treatment as a safety/pilot twenty. Of the next twenty, half will get the treatment and half will get placebo. I don't know how 'underway' it currently is.

:cry: :cry: :cry: :cry:

I cannot believe this. But it'll be ok. You cannot keep a good doctor down.


People are starting to get contacted and scheduled for this. But they MUST be on DMDs or they are disqualified from the study!!!!


quote]

First off, like many others have said, this is a huge disappoiuntment! I am very sorry for you Doc, but I know you'll bounce back!

Second, why would not taking a DMD exclude someone from this study?

It seems to me like that would be someone who they'd want so that they would know it was the procedure and not the DMD that was responsible.

All too convenient...
Last edited by AlmostClever on Tue Jun 22, 2010 11:28 am, edited 1 time in total.
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Postby mshusband » Tue Jun 22, 2010 11:15 am

"Inside of a ring or out, ain't nothing wrong with going down. It's staying down that's wrong."

---Muhammad Ali
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Postby JoyIsMyStrength » Tue Jun 22, 2010 11:17 am

Gather the pitchforks, troops. Dr. S, you are so good and kind. This is not fair but if it's any consolation you have an adoring fan club here. You have not let us down, you've been our friend. You're THE BEST and I know if we could, we would give you a group hug. For now...

{{{{{{{{{{{{{{{{{Dr. Sclafani}}}}}}}}}}}}}}}}}}}

Feel that love? Now please let us know how we can help.

Pam
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Postby SandyK » Tue Jun 22, 2010 11:19 am

I am sorry to hear about the IRB decision. I am angry and confused by their decision. Dr. S, we are behind you and we are many You have given us so much and we will do anything we can to help. Smoke is coming from my head because of all the prayers I am sending up. I keep having to repeat to do everything with love. My faith is really tested by this decision. I know you won't fade into the sunset. We'll come back stronger and better.
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Postby Cece » Tue Jun 22, 2010 11:31 am

AlmostClever wrote:Second, why would not taking a DMD exclude someone from this study?

Someone on another site suggested it was because Dr. Zivadinov had some funding from the drug companies. Less sinisterly, it could be because with the small sample size they want to keep things as much the same between the two groups. Surgical treatment is adjunctive, so people can stay on their DMDs, so it makes it more equalized across the groups if everyone's on a DMD?

:( :( :( :( :( :( :( :( :( :( :( :(
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby SaintLouis » Tue Jun 22, 2010 11:35 am

I am so sorry to hear of this decision from your IRB. By ignoring all the compelling reasons to go ahead with the study and picking out the obscure and mostly incorrect reasons not to do the study....I think your IRB panel is severely biased. Or somebody high-up there is and is having significant influence over this.

So, you will find somewhere else to treat and have your study - I'm so thrilled to read you are already looking! Perhaps it will work out in the long run that you are better off conducting your study and/or treating your patients in a place that is at the very least neutral on the subject, not breathing down your neck about it and who doesn't panic with every news release. What a difficult atmosphere to function in.

I only wish your IRB panel would've shown their true colors early on and not had you waste so much time and effort in trying to convince them.

I have little doubt that you will be treating patients somewhere before long. :D
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Postby drsclafani » Tue Jun 22, 2010 11:37 am

AlmostClever wrote:
girlgeek33 wrote:
Cece wrote:
drsclafani wrote:3. THAT RANDOMIZED CONTROLLED STUDIES WERE ALREADY UNDERWAY IN BUFFALO. ANYONE KNOW ABOUT THAT?


It's a small study of 30 patients. First ten are getting the treatment as a safety/pilot twenty. Of the next twenty, half will get the treatment and half will get placebo. I don't know how 'underway' it currently is.

:cry: :cry: :cry: :cry:

I cannot believe this. But it'll be ok. You cannot keep a good doctor down.


People are starting to get contacted and scheduled for this. But they MUST be on DMDs or they are disqualified from the study!!!!


quote]

First off, like many others have said, this is a huge disappoiuntment! I am very sorry for you Doc, but I know you'll bounce back!

Second, why would not taking a DMD exclude someone from this study?

It seems to me like that would be someone who they'd want so that they would know it was the procedure and not the DMD that was responsible.

All too convenient...



they have not treated any patients. they will count those cases toward a randomized prospective trial. i wonder how that will imparct results
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Postby ozarkcanoer » Tue Jun 22, 2010 11:38 am

There is a 30 person study of the procedure at BNAC. But why should that preclude Dr Sclafani from also doing the procedure ? I am so upset and confused !! Dr Sclafani, maybe you can participate with Dr Siskin in Albany NY !!!! He is doing Liberation procedures. Is Albany too far from Brooklyn ? Anything at all that I can do I will do. I have CCSVI and I have no options here in St Louis. Do these IRB people have their heads in the sand ? What can we do to help you, good doctor ?

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