For anyone scheduled with Dr. Sclafani...

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

Postby girlgeek33 » Thu Apr 08, 2010 6:51 am

drsclafani wrote:


dont forget that i need more patients now that i am doing research. we are still growing our patient list


Hi Dr. Sclafani!

Does this mean that the hold up has been lifted and you are rescheduling? I've been on the list, was initially told it would be April, then I was told April or May, then told more likely May or June and finally the latest news of things held up until all is sorted out internally. There had also been talk of adding additional scheduling days during the week to allow for more patients each week, this was before the halt. Is this happening now?

I understand how crazy things have been, I'm sure we have been inundating you and Holly. Holly has been amazing by the way! :) I can imagine you will have plenty of patients because since Wheelchair kamikaze posted your info, the rest of us knew we didn't have to be quiet about your info any more. Personally I know many have been asking for your info and were disheartened to hear that people had been called to not come to scheduled appts. All had feared the worst. Once I hear things are ready to go and you want to start scheduling again, I'll post on my facebook 33 B.R.A.T.S. page, and others will post too, you'll have all you need. :)

Is there a specific number you want to treat for a study? New calling patients were told that your list was already over a year out, anything change with that?

Sorry if this is all over the place, I just woke up...

Have a great day!
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Postby MSLiberation » Thu Apr 08, 2010 10:26 am

Hello Dr. Sclafani,
We met at the Hamilton conference, at which time I was very impressed by your knowledge and empathy. Now, after reading about everything you are doing for MS patients around the world, I am blown away by your kind heart, and tenacious spirit. We are so lucky to have an advocate like you.

I was tested in February and have severe stenosis of both jugular veins as well as reflux. I had contacted Holly a while ago and am on the waiting list to see you.

In regard to your research, in addition to volunteering my results, if I, or any other member of MS Liberation, can be of any help with research, fund raising, lobbying etc. please let me know. The MS community has thousands of members with various skills and talents. I am sure together we can help expedite your research.
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Postby drsclafani » Thu Apr 08, 2010 11:06 am

Posted: Thu Apr 08, 2010 11:51 pm Post subject:

--------------------------------------------------------------------------------

drsclafani wrote:Quote:


dont forget that i need more patients now that i am doing research. we are still growing our patient list


Hi Dr. Sclafani!

Does this mean that the hold up has been lifted and you are rescheduling? I've been on the list, was initially told it would be April, then I was told April or May, then told more likely May or June and finally the latest news of things held up until all is sorted out internally.


i am sorry if i am confusing people.

No, i am not restarted.
I am undergoing IRB review, but I am optimistic that I will be approved to continue under IRB oversite.

Yes, I would like to grow the waiting list.
I am discussing with colleagues some multicenter trial options and would like to have volunteers available when that comes about.

in the meantime, I am increasing the neurologist staff helping me. I would never treat MS without a neurologist and just about everyone with CCSVI has MS. When I am back in practice, I expect to increase my volumes to at least catch up or even increase my weekly patient volume.

So while holly is telling people that the wait is long, I am saying that i will cut that wait even if i have to give up all my other responsibilities as chairman at the University which I do not expect to have to do.

so sorry if i confused or raised hopes prematurely. But as i said we will prevail
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Postby MaggieMae » Thu Apr 08, 2010 11:34 am

Thanks Dr. Sclafani. I was really feeling anxious the last few days. My husband is also on the list for the testing/procedure with you. It is comforting to know that we have you in our corner.
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Postby girlgeek33 » Thu Apr 08, 2010 11:38 am

drsclafani wrote:
Posted: Thu Apr 08, 2010 11:51 pm Post subject:

--------------------------------------------------------------------------------

drsclafani wrote:Quote:


i am sorry if i am confusing people.

No, i am not restarted.
I am undergoing IRB review, but I am optimistic that I will be approved to continue under IRB oversite.

Yes, I would like to grow the waiting list.
I am discussing with colleagues some multicenter trial options and would like to have volunteers available when that comes about.

in the meantime, I am increasing the neurologist staff helping me. I would never treat MS without a neurologist and just about everyone with CCSVI has MS. When I am back in practice, I expect to increase my volumes to at least catch up or even increase my weekly patient volume.

So while holly is telling people that the wait is long, I am saying that i will cut that wait even if i have to give up all my other responsibilities as chairman at the University which I do not expect to have to do.

so sorry if i confused or raised hopes prematurely. But as i said we will prevail


Thanks for the clarification. need space to handle the masses, or maybe even some Drs & staff, St. Vincent's might offer exactly what you need. Shame about it, but how could would saving a hospital & many jobs with a CCSVI Center be? Talk about good publicity! lol
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Postby Cece » Thu Apr 08, 2010 1:10 pm

hey everyone...let's not make Dr. Sclafani keep two threads going...here is the other thread:

http://www.thisisms.com/ftopic-10680-480.html

:)
"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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I need direct contact info for Dr Sclafani

Postby brave » Thu Apr 08, 2010 2:48 pm

Hello Dr Sclafani
I e-mailed my request and interest in CCSVI more than 3 weeks a go to e-mail address that you posted but still haven't heard back yet.

You wanted us to contact you directly if we do not receive any reply , may I have any other phone# or email address to contact you directly?

Tanks in advance,
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Re: I need direct contact info for Dr Sclafani

Postby HollyBarr » Thu Apr 08, 2010 3:54 pm

brave wrote:Hello Dr Sclafani
I e-mailed my request and interest in CCSVI more than 3 weeks a go to e-mail address that you posted but still haven't heard back yet.

You wanted us to contact you directly if we do not receive any reply , may I have any other phone# or email address to contact you directly?

Tanks in advance,


Brave, I've responded to all inquiries to ccsviliberation@gmail.com within three days. Did you perhaps make a mistake with the email address? (I'm not perfect either; what I HAVEN'T kept on top of is my PM's here and, as Nunzio pointed out two days ago, I didn't confirm receipt of the form when I got it for the first few days in early March but have ever since.) :oops:
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Postby copacabana » Thu Apr 08, 2010 9:23 pm

i rarely post on here but had to let holly know she is a great person...you are the greatest...you must be swamped with calls among a ton of other things : )...kudos to you!!!
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