For anyone scheduled with Dr. Sclafani...

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

For anyone scheduled with Dr. Sclafani...

Postby Cece » Mon Apr 05, 2010 4:40 pm

...did you receive that phone call from Holly just now? Any idea what it means? I am worried...
"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 jr5646 » Mon Apr 05, 2010 5:26 pm

I got the call too, Cece... Worried also. I just confirmed hotel reservations today, which is no big deal because they can be cancelled, but my flight can't. I keep checking my e-mail constantly.

I feel like the wind got knocked out of me... Holly is so nice tho, but I sensed something bad and I'm fearing the worst...

Feeling like a dog on a short chain with the food bowl just out of reach... ugggh. Not sure how much more of this I can endure.
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Postby ikulo » Mon Apr 05, 2010 5:29 pm

could you guys update everyone else on what's going on?
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Postby jr5646 » Mon Apr 05, 2010 5:47 pm

Sure.. not much info. at this point ... I was (hopefully still am) scheduled to have ccsvi testing and treatment with Dr. Sclafani - for the week of April 19th - it's not looking good now though.

Anyway, I received an unusual call this evening (6:45 pm - Monday) from Holly - who did all the scheduling, and she wanted to let me know that something came up (would not go into details) regarding my appiontment. She recommended that I not make any travel / hotel arrangements just yet (I already have tho), and that all she could tell me was that Dr. Sclafani would be e-mailing me.

Will post more when I hear anything...
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Postby DizzyLiz » Mon Apr 05, 2010 5:58 pm

I think the hospital got nervous about an article about Stanford or something and Dr Sal will try to sort it out, so keep praying it is only a delay. We should be hearing from him or Holly later this week.
Fingers crossed and praying for help for all1 :?
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Postby mshusband » Mon Apr 05, 2010 6:12 pm

All: Let's calm down ... the message wasn't as bad as everyone is freaking out to make it ...

It said dates could be shuffled ... not cancelled ... not they're going to stop seeing patients.

It's possible a conference came up ...
It's possible some of his staff or himself had something come up ...

AGAIN ... IT DID NOT SAY DATES WOULD BE CANCELLED ... IT SAID "SHUFFLED".

Please remain calm ... pray ... and have faith. Dr. Sclafani is going to do right by his patients.
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Postby Cece » Mon Apr 05, 2010 6:28 pm

I think it may be more than shuffling.
Last edited by Cece on Tue Apr 06, 2010 12:59 pm, edited 1 time in total.
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Postby larmo » Mon Apr 05, 2010 9:38 pm

. .
Last edited by larmo on Tue Apr 06, 2010 9:35 am, edited 1 time in total.
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Postby drsclafani » Mon Apr 05, 2010 9:58 pm

I do not want to say anything official without advice from counsel.

Delay had to do with the wall street journal article and fears about a complication

maintain calm. hopefully the delay will not be too long. I will speak further by email and on line. I promise I will continue treating you, no matter what

frustrating for me too
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Postby Cece » Mon Apr 05, 2010 10:04 pm

larmo, thanks for posting, that explains a lot. Minor setback...that sounds much better than where my mind was going.

drsclafani wrote:I promise I will continue treating you, no matter what


thank you
Last edited by Cece on Mon Apr 05, 2010 10:16 pm, edited 1 time in total.
"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 eric593 » Mon Apr 05, 2010 10:15 pm

drsclafani wrote:I do not want to say anything official without advice from counsel.

Delay had to do with the wall street journal article and fears about a complication

maintain calm. hopefully the delay will not be too long. I will speak further by email and on line. I promise I will continue treating you, no matter what

frustrating for me too


I completely understand your position.

We will stand by you as you face this challenge. We are in this together.
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Postby Katie41 » Mon Apr 05, 2010 10:24 pm

I can so totally relate to those of you who now are in limbo (I was one of the six that was canceled at Stanford). Just keep your intention strong, keep all options open, go down all new paths, something will work for you. It may or may not be the direction you thought you were going to travel, but it will be a good direction for you.

All the best to you and Dr. Sclafani,

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Postby drsclafani » Mon Apr 05, 2010 10:37 pm

I can so totally relate to those of you who now are in limbo (I was one of the six that was canceled at Stanford). Just keep your intention strong, keep all options open, go down all new paths, something will work for you. It may or may not be the direction you thought you were going to travel, but it will be a good direction for you.

All the best to you and Dr. Sclafani,


Six patients cancelled at Stanford? I am dealing with about 175 patients, so this is very distressing

but I think Yogi Berra said it well,"when you get to the fork in the road, take it"

hang tight
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Postby costumenastional » Tue Apr 06, 2010 12:24 am

You are awesome.
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Postby shye » Tue Apr 06, 2010 4:49 am

Much LIGHT to you Dr Sclafani....
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