2nd Annual CCSVI Symposium in NYC July 15-17

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

Would you be interested in attending a patient day without cost?

yes
38
81%
no
5
11%
maybe
4
9%
 
Total votes : 47

Postby drsclafani » Thu Jun 30, 2011 10:23 pm

bestadmom wrote:I believe spouses need to be registered because it will help get an accurate count given the room size.


I want to clarify that bestadmom represents the meeting itself. She is on the organizing committee and speaks with authority

she communicates with the meeting coordinating company and American
Access as an advisor and patient representative

DrS
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Postby pklittle » Fri Jul 01, 2011 3:51 am

bestadmom wrote:I believe spouses need to be registered because it will help get an accurate count given the room size.


I asked because if I remember correctly, the registration had a question for number of attendees and i think I put 2(?).

I will register my husband separately and hope he's not double counted. :)
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Postby bestadmom » Fri Jul 01, 2011 4:56 am

PK,

Why don't you email BQuinones. Or should I?
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Postby Cece » Fri Jul 01, 2011 6:53 am

BQuinones' email can be found on the registration RSVP if needed.

I can understand about wanting a room in the same hotel as the convention. I'd have preferred that too but what can you do!
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Patient panel discussion

Postby drsclafani » Tue Jul 05, 2011 11:40 am

Rather than the testimonial method of patient participation, I have chosen a round table discussion of the procedure with all panelists being patients and me being moderator.

If there are any questions out that readers would like to propose to the panelists, please state them here or on DrSclafani answers some questions...

thanks

sal sclafani, an equal opportunity doctor :lol:
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Postby pklittle » Wed Jul 06, 2011 7:55 pm

Questions for patient roundtable:

1. If you suffered from MS pain, please describe the type of pain you experienced and what relief, if any, you received by having CCSVI treatment.

2. If you had mobility problems, did having CCSVI treatment help you in any way?

3. If you have numbness, did CCSVI treatment eliminate it?

4. Did CCSVI treatment improve your sense of balance?
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Postby JohnAm » Thu Jul 07, 2011 2:11 am

Questions for patient round table:

1. What criteria did you use for choosing clinic and doctor
2. Why did you decide to go now and not later
3. How would you describe follow up care, challenges and strategies for this
4. Did you establish a relationship with a local radiologist/vascular doctor before you travelled
5. How would you describe your relationship and follow up with neurologist after
6. Did neurologist show any intellectual curiosity and ask relevant questions
7. What are the three greatest improvements that you experienced
8. Anyone being or becoming a CCSVI advocate before/after procedure

sorry if I'm repeating q's here ...

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Re: Patient day

Postby drsclafani » Fri Jul 08, 2011 4:40 pm

EuroMedic wrote:We remind you that Dr. Tomasz Ludyga MD PhD will host the Patient Day (Friday July 15, 2011) during CCSVI NYC Symposium. We encourage you to ask questions about CCSVI treatment and Liberation Procedure. EuroMedic Clinic in Poland (Katowice) is a medical center, which so far has done the most procedures in the world. His experience and knowledge might be very helpful for all MSers.


THIS IS IRRESPONSIBLE AND DISHONEST


dr ludyga is not hosting anything at the NYC CCSVI conference. He is not participant in this conference. as a host, a speaker or a moderator. This day is for patients and not physicians trying to drum up business. It is not about an uninvited person advertising and misleading patients..

i know dr ludgya. I liked him. But this is too much.

I am incredulous about this.
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Postby Cece » Fri Jul 08, 2011 5:57 pm

On a very different subject 8O
Thought I would share this in case anyone else uses restaurant.com: they have the restaurant from the Times Square Crowne Plaza ("Brassiere 1605") as a choice. There is also an 80% off code ("SUN") that is good through today's sale.
www.restaurant.com/rdc/brasserie-1605-n ... n=00062765
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Re: Patient day

Postby jgalt2009 » Fri Jul 08, 2011 6:15 pm

drsclafani wrote:i know dr ludgya. I liked him. But this is too much.
I am incredulous about this.

Just a thought, Doc... might be one of his groupies, or someone on his staff. I've never heard of him, so I'm not defending irresponsible actions. But someone once sent out an obnoxious email from my desk computer, and I had a hell of a time proving it wasn't me.
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Postby Cece » Fri Jul 08, 2011 7:50 pm

Doctors have groupies????

Here is a more balanced post from EuroMedic, where it's stated that he'll be attending and available. The word 'host' may have been a mistranslated misuse? I am not excusing the rest of it....

www.thisisms.com/ftopicp-169066.html#169066
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Postby drsclafani » Fri Jul 08, 2011 8:51 pm

Cece wrote:Doctors have groupies????

Here is a more balanced post from EuroMedic, where it's stated that he'll be attending and available. The word 'host' may have been a mistranslated misuse? I am not excusing the rest of it....

www.thisisms.com/ftopicp-169066.html#169066


i do not find it acceptable for physicians not on the panel to be available to go to a patient day to drum u p business. that is a distraction and a discourtesy to patients, the people who have worked hard to create lectures on patient issues and to the organizers. There was no solicitation to other physicians inviting them to patient day.

i do not find this appropriate. This day is about education of patients about serious patient issues, including lectures by nurses, technologists and physicians about issues that patients must be familiar with. Lets not have distractions There will be invited physicians present who will make themselves available to answer patient questions over coffee from 830 until 10 as part of the conference.They are traveling early to help me with this. Should we have many others competing for the patients? How disrespectful.
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Postby pklittle » Fri Jul 08, 2011 9:08 pm

When I first read that post about the Polish doctor "hosting" I was shocked because I was positive our Dr Sclafani was hosting. Thanks for setting the record straight Dr! :mrgreen:
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Postby eric593 » Fri Jul 08, 2011 9:22 pm

drsclafani wrote:
Cece wrote:Doctors have groupies????

Here is a more balanced post from EuroMedic, where it's stated that he'll be attending and available. The word 'host' may have been a mistranslated misuse? I am not excusing the rest of it....

www.thisisms.com/ftopicp-169066.html#169066


i do not find it acceptable for physicians not on the panel to be available to go to a patient day to drum u p business. that is a distraction and a discourtesy to patients, the people who have worked hard to create lectures on patient issues and to the organizers. There was no solicitation to other physicians inviting them to patient day.

i do not find this appropriate. This day is about education of patients about serious patient issues, including lectures by nurses, technologists and physicians about issues that patients must be familiar with. Lets not have distractions There will be invited physicians present who will make themselves available to answer patient questions over coffee from 830 until 10 as part of the conference.They are traveling early to help me with this. Should we have many others competing for the patients? How disrespectful.


Euromedic is posting this information all over Facebook as well.
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Postby JohnAm » Sat Jul 09, 2011 3:17 am

I believe it is Euromedic staff that is distributing this information. Dr Ludyga and Gregory that are partners at the Euromedic operation should of course guide their marketing and communication staff about these practices. I think this is completely inappropriate a show a lack of good judgment.

Another example of Euromedic “information” on this thread: http://www.thisisms.com/ftopict-17158.html

I understand many of the Canadians are now going to clinics in the US seriously affecting their booking schedule. Language barriers, cross-language translations, etc nevertheless - an apology is in order.

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