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

Postby ndwannabe » Sun May 16, 2010 9:38 pm

Liber8, they do stenting when deemed necessary (when they see that ballooning does not hold)

I also asked them if they had any patients with negative CCSVI diagnosis. he said they had 4 (out of 15).
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Postby ikulo » Sun May 16, 2010 9:50 pm

ndwannabe wrote:
I also asked them if they had any patients with negative CCSVI diagnosis. he said they had 4 (out of 15).


any idea if this is with venogram diagnosis or with mrv/doppler?
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Just got my balloon angio in SD

Postby devinhubbard » Sun May 16, 2010 10:05 pm

My father, a neuro, tried to get me into a study and couldn't, so he started scanning the haacke protocol down here, and found an IR to treat me. We should be referring patients for the venoplasty by mid june. hubbardfoundation.org. Hope this helps.
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Postby blossom » Sun May 16, 2010 10:37 pm

hi, were you tested and treated or tested only. regardless, this gives all of us some hope . thank your father for his part in making a difference and you for shareing.
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was given the balloon angio on May 6th

Postby devinhubbard » Sun May 16, 2010 10:44 pm

on both jugulars and my azygous. No more brain fog or fatigue. No more double vision. Feel so good! I want this for everyone.
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Postby ndwannabe » Sun May 16, 2010 11:23 pm

ikulo wrote:
ndwannabe wrote:
I also asked them if they had any patients with negative CCSVI diagnosis. he said they had 4 (out of 15).


any idea if this is with venogram diagnosis or with mrv/doppler?


As per Dr.Siskin's e-mail they do venograms.
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Postby Liber8 » Tue May 18, 2010 2:42 pm

anyone else contacted by this clinic for potential dates ? Anyone given a date for test/treat for that matter?
RR DX 1993
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Postby newlywed4ever » Tue May 18, 2010 4:56 pm

I rec'd the initial contact for my insurance info, etc. on Monday, May 17. The receptionist told me I would be contacted this week by the doctor...
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Postby Jenb » Wed May 19, 2010 10:31 am

Looks like beginning of August for me...
They called today with a date in July but to soon for me , still need passport and $$. :D
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Re: Just got my balloon angio in SD

Postby Trine » Wed May 19, 2010 10:42 am

devinhubbard wrote:My father, a neuro, tried to get me into a study and couldn't, so he started scanning the haacke protocol down here, and found an IR to treat me. We should be referring patients for the venoplasty by mid june. hubbardfoundation.org. Hope this helps.



Hi Devin,

So is there a wait list started to get treatment when/if the time comes?

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Postby Jenb » Wed May 19, 2010 1:15 pm

ndwannabe wrote:
ikulo wrote:
ndwannabe wrote:
I also asked them if they had any patients with negative CCSVI diagnosis. he said they had 4 (out of 15).


I wonder about the rate of 26% that are found without ccsvi.. If that number is from the dopplar or mrv , it sounds "normal" with the known false negative rates. But if they are quoting those negative rates from the "Gold Standard" I would have questions, since most others doing the procedure seem to be running at less than 10 % without blockages or valve problems ..............
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Postby pklittle » Wed May 19, 2010 1:20 pm

Dr. Siskin uses venogram to rule out ccsvi.
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Postby pklittle » Wed May 19, 2010 1:22 pm

Jenb wrote:Looks like beginning of August for me...
They called today with a date in July but to soon for me , still need passport and $$. :D


Jenb, do you know approx. where you were on their list of 60?
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Postby Cece » Wed May 19, 2010 4:36 pm

The further down the list you are, the more experienced they will be by the time they get there! I agree that finding CCSVI in 74% is low compared to other doctors. Either the other docs are overtreating or the new guys :) are missing CCSVI in some patients....
"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 Rokkit » Wed May 19, 2010 5:21 pm

Keep in mind 15 is not a very large sample size. Their percentage might get a lot higher with a few more patients.
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