For anyone scheduled with Dr. Sclafani...

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

Postby Nunzio » Tue Apr 06, 2010 3:08 pm

I have a suggestion; I applied to Dr. Sclafani site more then a month ago and I have not received an answer yet.
I know Holly is very busy but I am concerned that my application got lost in cyberspace; I sent Holly a private message but she did not answer to that either.
It would be nice to receive a confirmation of the received application; even an automatic e-mail; I do not want to be impolite and keep bugging her but I would like to know that my application was received.
Thanks to everybody.
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Postby drsclafani » Tue Apr 06, 2010 3:25 pm

I have a suggestion; I applied to Dr. Sclafani site more then a month ago and I have not received an answer yet.
I know Holly is very busy but I am concerned that my application got lost in cyberspace; I sent Holly a private message but she did not answer to that either.
It would be nice to receive a confirmation of the received application; even an automatic e-mail; I do not want to be impolite and keep bugging her but I would like to know that my application was received.


nunzio
please email to ccsviliberation@gmail.com

perhaps it was misfiled or the email address misspelled. Holly is methodical to a fault

she promises to write back within 3 days. if you do not get a response in 3 days, send me a private message and i will correct

sorry
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Postby drsclafani » Tue Apr 06, 2010 3:41 pm

I AM GOING TO SPEAK ABOUT ISSUES SURROUNDING MY SHUT DOWN ON MY USUAL SITE. WE WILL SPEAK ABOUT IRBs, AND OTHER ISSUES GERMAINE TO THIS
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Postby girlgeek33 » Tue Apr 06, 2010 4:52 pm

Well, part of this has to do with the Pharma's not wanting to lose their income stream. Neuro's & NMSS' right in line with the party line, must be on CRABs or Tysabri or disease will progress! We can all put a damper in that now and benefit ourselves in the process. Go generic!!!! LDN for everyone!!!!!!!! :D :!: :!: :!:
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Postby soapdiva884 » Tue Apr 06, 2010 4:58 pm

drsclafani wrote:I AM GOING TO SPEAK ABOUT ISSUES SURROUNDING MY SHUT DOWN ON MY USUAL SITE. WE WILL SPEAK ABOUT IRBs, AND OTHER ISSUES GERMAINE TO THIS


Dr. Sclafani, can you tell me what your USUAL site is please? Thank you so much. And by the way, thank you for everything your doing for all that suffer from MS!

*This is Billie, John's girlfriend whom you talked with today*
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Postby jr5646 » Tue Apr 06, 2010 5:52 pm

soapdiva884 wrote:Dr. Sclafani, can you tell me what your USUAL site is please? Thank you so much. And by the way, thank you for everything your doing for all that suffer from MS!

*This is Billie, John's girlfriend whom you talked with today*


Bille, see this this thread - Dr. Scalfani answers some questions -jump towards the last few posts... Worthwile to read from the beginning too.

http://www.thisisms.com/ftopict-10680.html
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Postby Rose2 » Tue Apr 06, 2010 6:09 pm

Oh Crap!!!!!
What next??????
I am so sorry for everyone involved in this setback.
WILL SOMEONE PLEASE LOOK AT ME?????????????????????
IT WORKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Thank You Dr. S for hanging in there.
Sincerely,
Rose ;)
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Postby girlgeek33 » Tue Apr 06, 2010 6:16 pm

@ Dr. Sclafani - The cause of the hoops you have to jump through now, do they realize at all that you are not doing the same procedure as what was written about in Wall Street Journal??? Do you have to stop ALL angioplasty treatments on any patient for any reason??? Just blows me away that a well established procedure like angioplasty is getting so much crap simply because the reason for doing it is new and a different part of the body than what is typical...
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Postby mshusband » Tue Apr 06, 2010 6:26 pm

All:

Can we keep in mind that IRB is a basic research proposal methodology that makes sure doctors are doing what they say they're supposed to be doing. Heck, it's used for regular bachelors and masters degrees too ... not just CCSVI medical research.

This is not "them" shutting down a procedure or anything like that ... this is just making sure what's going on serves a research purpose (at least from what I gather).

Again, don't make this out to be a HUGE deal ... don't turn on CCSVI, the doctors fighting for MS patients (like Dr. Sclafani), and continuing to find local doctors and furthering the spread of information about this.

Keep the faith ... like Dr. Sclafani said ... this is just a speedbump.
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Postby Rose2 » Tue Apr 06, 2010 6:55 pm

Dear mshusband,
This IS a HUGE deal. A very HUGE deal.
Why should we have patience while MS progresses when there is a treatment that works?
I refuse to be polite and wait for subjective studies.
The treatments need to go forward because IT WORKS.
Thanks and sorry for my rude behavior but it is HUGE DEAL.
Rose
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Postby girlgeek33 » Tue Apr 06, 2010 7:55 pm

St Vincent's Hospital is closing doors for all services but HIV & Cancer centers. Hhhmmm, could this be an opportunity to set up a CCSVI center??? NYC, great location! I also know of a great building in my town that may offer possibilities.

How does something like a CCSVI Center get started? Anything little people like me could do?
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Postby Cece » Tue Apr 06, 2010 8:51 pm

drsclafani wrote:I AM GOING TO SPEAK ABOUT ISSUES SURROUNDING MY SHUT DOWN ON MY USUAL SITE.


Yes, of course...in many ways I created this thread not expecting you to chime in!! And of course full of worry and sadness.
"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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Dr. Scalfani

Postby JaneM » Wed Apr 07, 2010 3:43 am

drsclafani wrote:I AM GOING TO SPEAK ABOUT ISSUES SURROUNDING MY SHUT DOWN ON MY USUAL SITE. WE WILL SPEAK ABOUT IRBs, AND OTHER ISSUES GERMAINE TO THIS


Is there anything that the people interested in seeing that diagnosis and treatment for CCSVI go forward can do? How do we support you?
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Postby drsclafani » Wed Apr 07, 2010 9:10 pm



PostPosted: Wed Apr 07, 2010 9:43 pm Post subject: Dr. Scalfani Reply with quote
drsclafani wrote:
I AM GOING TO SPEAK ABOUT ISSUES SURROUNDING MY SHUT DOWN ON MY USUAL SITE. WE WILL SPEAK ABOUT IRBs, AND OTHER ISSUES GERMAINE TO THIS


Is there anything that the people interested in seeing that diagnosis and treatment for CCSVI go forward can do? How do we support you?


dont forget that i need more patients now that i am doing research. we are still growing our patient list
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Postby newlywed4ever » Thu Apr 08, 2010 3:57 am

I'm pretty sure I can get enough of us from Michigan to carpool - now with the invitation to get more of us, I'll work on a bus tour :D
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