CCSVI Education Program at USF in Tampa, FL 2/18/10

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

CCSVI Education Program at USF in Tampa, FL 2/18/10

Postby GinR » Thu Jan 07, 2010 9:20 am

Hi I am so excited to share this information! Dr. Krolczyk is my mother's neurologist (for the last 3 years). We are excited that he is meeting with Zamboni and Haacke on the Feb. 6th and is excited to share this information so QUICK!

I'm not sure how many members are in the Central Florida area BUT I had to share!

~GinR

~~~~~~
Research into Blood Flow in the Brain and Venous Insufficiency, or CCSVI, in MS is a new and potentially interesting area in MS research. Dr. Krolczyk will be traveling to Canada in early February to meet with Dr.'s Zamboni and Haacke and other experts to learn more about this new data. We will be holding an education program to discuss this research on February 18th at 6pm at the Byrd Center. Since this is an area of great interest, we expect a high attendance. We respectfully request you limit the number in your party to two. Please RSVP by February 3rd to reserve your seat. Please RSVP via email at rsoares@health.usf.edu or call 813-396-9656 813-396-9656 and leave your name and phone number. Thank you and we hope to see you there!

Held at:
Johnnie B. Byrd, Sr., Alzheimer's Center & Research Institute
University of South Florida
4001 Fletcher Avenue
Tampa, FL 33613
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Postby LR1234 » Thu Jan 07, 2010 9:30 am

That is very exciting!!!! Keep us posted!
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Postby GinR » Thu Jan 07, 2010 9:38 am

LR1234 wrote:That is very exciting!!!! Keep us posted!


Without a doubt! Dr. Krolczyk's assistant has told my mother (last week) that USF will most likely be doing a study on CCSVI but no particulars have been released. We are hoping that more info will be released during this seminar.

:)
~GinR
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Postby kathryn6112 » Thu Jan 07, 2010 8:47 pm

Hi, do you know if they are letting anyone come? Tampa is only about 5 hours from me and definitely the nearest place I have heard that there is an interest in CCSVI. It wouldn't be a problem for me to come for the seminar, or to participate in the study either! Thanks!
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Postby JoyIsMyStrength » Thu Jan 07, 2010 8:56 pm

WOW!! Dr. Krolzcyk is my doctor as well! I had emailed him a few weeks ago about this and he said they were looking into it but this is FAST!

Hooray! :D :D :D

Pam-Joy
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Postby GinR » Fri Jan 08, 2010 8:00 am

kathryn6112 wrote:Hi, do you know if they are letting anyone come? Tampa is only about 5 hours from me and definitely the nearest place I have heard that there is an interest in CCSVI. It wouldn't be a problem for me to come for the seminar, or to participate in the study either! Thanks!


I am pretty sure this is open to the General Public. The only way you can find out for sure is to just call and ask! Totally worth it!

I will update after the session for those who couldn't make it!
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Postby bigfoot14 » Fri Jan 08, 2010 8:15 am

it is open to the public....they are taking reservations, with a limit of two people per reservation. I don't know how big the Byrd center is, but they expect to fill it......

I can't make it there from chicago on that date, but I did send an email yesterday asking if would be available as a web cast or teleconference. I haven't recieved an answer yet....
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Postby GinR » Fri Jan 08, 2010 9:40 am

JoyIsMyStrength wrote:WOW!! Dr. Krolzcyk is my doctor as well! I had emailed him a few weeks ago about this and he said they were looking into it but this is FAST!

Hooray! :D :D :D

Pam-Joy


Dr. Krolczyk is AMAZING.. (and eye candy!) Hope you are able to make it to the session!
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Postby JoyIsMyStrength » Fri Jan 08, 2010 10:06 am

Yes he is dreamy. :wink: I love him because he honestly listens, prescribed LDN when no one else would touch it with a 10 foot pole, and is monitoring me as I explore natural alternatives like diet modification (having already tried and failed with Copaxone and Betaserone). He's the best.
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Postby bigfoot14 » Wed Jan 13, 2010 12:42 pm

FYI

This event is sold out...every seat in the center is reserved

This is the reply I got to my email asking if this would be web-cast

After talking with Lise Casady she explained this will not be webcast. It is an informal presentation wtih Q & A.In addition, due to the popularity of the seminar we are currently at maximum capacity and will not be able to reserve anymore seats at this time. Sorry for the inconvenience but we are discussing scheduling another in the future and we will notify you if we receive full clearance to do so.
Thank you for your patience and cooperation,
Robert Soares

Robert Soares
Administrative Assistant
Multiple Sclerosis Division
College of Medicine
Phone:(813)396-9656
Fax:(813)974-7138


I guess this is a hot topic :lol:
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Postby bestadmom » Wed Jan 13, 2010 1:09 pm

It sounds like the doc is a hot topic too!
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Postby JoyIsMyStrength » Wed Jan 13, 2010 2:52 pm

Here is the good doc:

http://health.usf.edu/medicine/neurolog ... olczyk.htm

The photo doesn't do him justice. Anyway he is young and has enough education and prestige for someone his age to be arrogant but apparently someone forgot to clue him in. Shhhh, nobody tell him. He is very personable, open minded, caring, and best of all, understands my weird sense of humor.

I have bounced around from one close-minded, arms-folded neurologist to another. To them it's like "Tysabri is the only way... and forget about LDN..." which makes me so upset. I understand that they are doctors and after all, drugs are all they know. If I respectfully refuse their advice, of course they feel frustrated and I am seen as a problem patient. I can see it from their viewpoint. So I went 3 years without seeing a neuro.

Finally I went to see Dr. Krolczyk. He wants me on the DMDs... he can't help it, it's in these docs' DNA... but instead of pressuring me he just shrugged and said, with a sincere smile, "Well you did try them for five years. That's a fair trial. I can understand why you're frustrated and want to try alternatives." Then he prescribed LDN and even asked if I had heard of 4AP. I was floored. He is now monitoring me as I explore gluten and dairy free (I've been on Swank diet for 18 months too). If this doesn't work, well guess what, I will be far more inclined to hear him out on the DMD's. It's like we're in on this little experiment together.

He is a keeper.
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Postby bestadmom » Wed Jan 13, 2010 3:03 pm

I googled him before I posted about him being hot! He's a do, which is interesting to me. Osteopaths take a wholistic view of the person - he's not just looking at the brain and spinal cord. I wish all western doctors were that way.
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Postby Bubba » Wed Jan 13, 2010 4:14 pm

First off.... DANG! I dont know how I missed this post???? I see Dr. Brock at USF Neurology (and nope, I don't think he is hot..LOL) I have inquired with him about LDN, and he just blows me off and tells me it is not available. I would love for USF to get onboard with ccvsi.
I am a little disappointed with the quality of care at USF Neurology. My doctor, seems like he barely listens to me, denies all my requests, and sort of "writes me off".
I also go to USF Urology. I have recieved nothing but the finest care.
I have an appointment next month with Dr. Brock, I am going to see what he has to say about ccsvi.
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Postby JoyIsMyStrength » Wed Jan 13, 2010 4:33 pm

Bubba, Life is too short to be seen by (and PAY) a doc who brushes you off. Seriously, who needs the stress? I do believe USF is at least looking at this or they wouldn't be hosting a seminar; in fact I think they're working on a testing protocol.

Much as I hate to share my *find* -- yikes what if he gets too busy for l'il ol' me? :wink: -- I think you should look into switching to Dr. K. He is busy and it's hard to get in but he will not brush you off. In fact the only reason I scheduled an appt. was because I heard he might be open minded to LDN.

By the way, LDN has not been a miracle drug for me, mostly just makes me more cheerful, but guess what? It is my body and it's an FDA approved drug and it's practically harmless at this tiny dose (even my ex-neuros admitted as much) and costs WAY less than anything else. I'm going to keep taking it and wait and see. Like I always say, even if it's just a placebo effect, if it makes me feel better who cares? I'll take it. You should get a chance to take it, too. A lot of people swear by it.

Shame on Dr. Brock. Next time he tells you LDN is unavailable ask him if he's ever spoken with his colleague Dr. Krolczyk, and say "You know, the Director of the USF MS Center? You've heard of him, right? Might want to check with him on whether or not it's available."

Sheesh! :roll:

All the best,
Pam
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