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 » Wed Jan 13, 2010 4:48 pm

I will do that! :D
I wonder if anyone is taking Rebif and LDN? I wonder if you can even do that?
As far as USF goes, I personally think they have some of the finest doctors in the states! I will give Dr. Brock a few more attempts at my care then I might look for another dctr there.
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Postby JoyIsMyStrength » Wed Jan 13, 2010 4:54 pm

Good for you, Bubba! There is a whole section on LDN here. Just go to the main forum index -- you'll see it. I'm sure someone can answer your questions about Rebif etc.

Pam
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Postby ErikaSlovakia » Thu Jan 14, 2010 2:45 am

Bubba wrote:I will do that! :D
I wonder if anyone is taking Rebif and LDN? I wonder if you can even do that?
As far as USF goes, I personally think they have some of the finest doctors in the states! I will give Dr. Brock a few more attempts at my care then I might look for another dctr there.

Hi Bubba!
I am not 100% sure because I have never been on any DMDs but I take LDN.
Before the pharmacy sends me next 84 pills of LDN I get an e-mail from them and it says I should not take LDN with interferons.
You should check it before you start. Anyway they always ask me before thy send my next supply what medications I take.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Bubba » Thu Jan 14, 2010 5:53 pm

ErikaSlovakia wrote:Before the pharmacy sends me next 84 pills of LDN I get an e-mail from them and it says I should not take LDN with interferons.
You should check it before you start. Anyway they always ask me before thy send my next supply what medications I take.
Erika


Very good information! I will put that question on my list for the Neuro! Thanks :D
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Postby kathryn6112 » Fri Jan 22, 2010 4:44 pm

Good news! I just got off the phone with Lisa Cafferty at USF and, because of all the interest, they have added an 8pm seminar! I left a message for them about 1 week ago and she just got back with me tonight. I know she is calling other people back, but you might still be able to get in if you call her as soon as possible. Her number is 813-974-8859.

I spoke with her briefly and she said that the doctor is very interested in CCSVI and plans to present a program for patients that explains it and his thoughts about it after talking with the pioneers in Vancouver.

Tampa is about a 6 hour drive for me, but I love Busch Gardens anyway, so ... :) Hope it won't be cold!

Anyone else here attending? Which meeting? I will post some info when I get back.

Kathryn
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Meeting with Zamboni

Postby foreignlesion » Fri Jan 22, 2010 7:40 pm

Where in Canada is your Neuro meeting with Zamboni?

I have not heard anything about Zamboni being here, and would like to know if he is currently working with any Canadian doctors.
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Re: Meeting with Zamboni

Postby GinR » Fri Jan 22, 2010 7:46 pm

foreignlesion wrote:Where in Canada is your Neuro meeting with Zamboni?

I have not heard anything about Zamboni being here, and would like to know if he is currently working with any Canadian doctors.


I am not sure where exactly in Canada Dr. Krolczyk is meeting with Zamboni. I do not think that part was announced by USF, only that he was heading to Canada in early February.
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Postby foreignlesion » Fri Jan 22, 2010 7:51 pm

I just saw another post on the studies commencing at UBC and they were meeting with Zamboni there, so that may be it, but that is simply for testing studies, not treatments. I was kind of hoping to hear of Canadian docs looking into treatment as well.
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Postby kathryn6112 » Fri Jan 22, 2010 8:54 pm

I don't know where in Canada they are meeting either. I must have Vancouver on my mind and that's why I put it down. Sorry!
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Postby dialed_in » Sat Jan 23, 2010 9:35 am

There is a workshop in Hamilton in early Feb that Dr Haake is hosting. I believe they are heading there.
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Postby Bubba » Tue Jan 26, 2010 8:36 pm

I called the number and they called back. Apparently there are tons of people wanting to hear what they have to say. They are having a second lecture, and I was able to get on the list!!!
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Postby GinR » Thu Feb 18, 2010 8:57 am

I'm excited for the seminar today! I have 2 reserved seats for the 6 pm seminar. I'll share any information passed out with the group!

~GinR

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Postby Bubba » Thu Feb 18, 2010 9:00 pm

Just got home from the seminar. I was fascinated listening to the Great Dr. "K"





JoyIsMyStrength wrote: 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.



His presentation was theraputic for me in a way. I feel as though a great weight was lifted off my "Thought" shoulders.
Knowing this Doctor is "in our game", gives me great hope. The intelligence and enthusiasm he has is second to none.
Apparently, he has applied for a grant for USF to begin the "Trial testing" stage of the process. Probably around June or July.
I had the priviledge of talking to him after his presentation. JoyIsMyStrength is right, he is very open minded, super smart, and very enthusiastic about helping us. :D
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Postby GinR » Thu Feb 18, 2010 10:26 pm

Bubba wrote:Just got home from the seminar. I was fascinated listening to the Great Dr. "K"





JoyIsMyStrength wrote: 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.



His presentation was theraputic for me in a way. I feel as though a great weight was lifted off my "Thought" shoulders.
Knowing this Doctor is "in our game", gives me great hope. The intelligence and enthusiasm he has is second to none.
Apparently, he has applied for a grant for USF to begin the "Trial testing" stage of the process. Probably around June or July.
I had the priviledge of talking to him after his presentation. JoyIsMyStrength is right, he is very open minded, super smart, and very enthusiastic about helping us. :D


I should have waved! What did you take away from it? I feel he is in our court and excited about the science of it but hesitant to make claims because the science is still "new". I was able to record the seminar. I can't wait to re-listen it to make sure I heard everything correctly.

Were you at the 6 or the 8?
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Postby JoyIsMyStrength » Fri Feb 19, 2010 7:03 am

I was at the 6 pm program. He borrowed Dr. Haacke's PowerPoint slides which have already been posted here for all to see.

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.

So to those who have been tested only to be told your results are normal, take heart. It could be that you just need to wait until docs are trained to interpret the results correctly or get Dr. Haacke to look at them. This point deserves its own thread I think.

Dr. Krolczyk already has 1500 patients and he is only one man. He really has his hands full. He feels things will break open a bit and things will be more accepted after April. I guess there is more info coming out of Buffalo at that time.

Excellent presentation overall. :)

Pam

edited to correct minor typo
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