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.

Postby Bubba » Fri Feb 19, 2010 6:39 pm

JoyIsMyStrength wrote:I was at the 6 pm program.


I think one of the most important things I took away from the presentation was his honest (even humble) admission that at the meeting in Canada as he was looking at films (MRVs?) he would think, "Oh yes, this vein is definitely stenotic, I can see the narrowing..." but then when shown to him from a different angle, surprise, no stenosis. The reverse is also true.

He said -- and he couldn't stress this enough -- that it is critical to have someone who really understands how to interpret test results. Docs and technicians can follow testing protocol but there are only a few people in the country (most notably Dr. Haacke but there are others like Dr. Z in Buffalo) who can accurately interpret the results. He admits that he is not one of them... yet.

Dr. Krolczyk already has 1500 patients and he is only one man.
Excellent presentation overall. :)

Pam

edited to correct minor typo



I was at the 8pm meeting. His honesty was very impressive. He told me that he is vastly approaching 2000 patients! BUT, I did get about the same thing from the seminar as you did, only, now I have even more hope after I met him. I still have the same opinion on ccsvi, only alot more cautious in what i see now. I seen "both sides" of the ccsvi argument, for lack of better words....
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Postby WeWillBeatMS » Fri Feb 19, 2010 9:17 pm

Hi Bubba, JoyIsMyStrength, & GinR. I am down in South Florida (East coast) and my wife and I actually had two spots reserved for the 8pm presentation w/ Dr. Krolcyk but since I couldn't get the next day off we had to skip it. I really did want to go hear him. GinR a big THANK YOU for starting this thread because it is how I heard about Dr. Krolcyk and now I have an appointment with him. Granted it's not until 2013 but it sounds like it might be worth the wait. (it's actually five months away). I sent out 20 letters to interventional radiologists, and vascular surgeons at the big teaching universities around me such as University of Miami and the Cleveland Clinic in Weston, FL as well as the Mayo Clinic up in Jacksonville. I also mailed to some nuerologists as well as one very established yet independant I.R. quite close to where I live. Guess where my one appointment came from? The independant I.R. I was quite surprised but pleased. The doctor was rather happy to hear from me and when I finally got to speak to this nice lady at his office she mentioned that he was asking her several times if she had heard back from me yet! Turns out he knows Dr. Dake from one of his residencies. The meeting went pretty good. I was trying to not get my hopes up too much beforehand but you know it's hard not too after suffering with this stupid disease for five years. Basically we just talked and he told me that he had been doing some research on his own about CCSVI so when my letter hit his desk he was happy to at least meet with me. He has a big, new, state of the art facility where he actually did a study previously dealing with varicous veins I believe. He mentioned possibly getting a study going at his office or getting me into another one that's already going. So maybe I could get into the one at USF. I'm hopeful for the first time in a long time now. I know ultimately my real hope for my future is in Jesus but it sure would be nice to stop this disease in it's tracks while I'm still on this earth. I only found out about CCSVI for the first time a few weeks ago and I almost cried when I saw the Canadian news clips with Doctor Zamboni. I definitely got the sense from listening to him that he just wanted to help his sweet wife first of course but that now he really does want to help all of us. God protect him and Dr. Haacke and the other doctors because they are definitely going up against some $BigPharmaDollars$. Thank you for giving us all a little bit of an update on the presentation at USF last night.

faith, hope & love

WeWillBeatMS
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Postby JoyIsMyStrength » Fri Feb 19, 2010 10:25 pm

Wow, WeWillBeatMS! Welcome and waaaaaaay to go getting that appointment! So glad you are here.

Pam
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CCSVI docotr in central Florida?

Postby nadasuit » Sat Jul 03, 2010 2:32 pm

Hi, WeWillBeatMS

I live in central Florida and actually did send out some letters to several IR but no response yet. Would you please email me NADASUIT@AOL.COM and lead me in the right direction? I have secondary progressive and the clock is ticking for me.
Thanks!
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USF doc doing study?

Postby cmozena » Sun Aug 01, 2010 8:11 am

To GinR
Is there anymore news on USF doing a CCSVI study? You had indicated Dr. Krolcyk is your mother's Neuro. I'm writing from Jacksonville,FL
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I had ccsvi (angio) done here in Florida!

Postby nadasuit » Sun Aug 01, 2010 9:25 am

People, there is no need to wait until 20111, 2012, 0r 2013 like some say. I had my procedure done already. There are over 20 doctors here in the US doing this. Your health insurance covers it as well.
I'm doing great - many symptoms improved or reversed
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Postby cmozena » Wed Aug 04, 2010 10:24 am

nadasuit - I sent you a PM
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