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Posted: Sun May 16, 2010 8:38 pm
by ndwannabe
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).
Posted: Sun May 16, 2010 8:50 pm
by ikulo
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?
Just got my balloon angio in SD
Posted: Sun May 16, 2010 9:05 pm
by devinhubbard
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.
treatment available in usa
Posted: Sun May 16, 2010 9:37 pm
by blossom
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.
was given the balloon angio on May 6th
Posted: Sun May 16, 2010 9:44 pm
by devinhubbard
on both jugulars and my azygous. No more brain fog or fatigue. No more double vision. Feel so good! I want this for everyone.
Posted: Sun May 16, 2010 10:23 pm
by ndwannabe
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.
Posted: Tue May 18, 2010 1:42 pm
by Liber8
anyone else contacted by this clinic for potential dates ? Anyone given a date for test/treat for that matter?
Posted: Tue May 18, 2010 3:56 pm
by newlywed4ever
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...
Posted: Wed May 19, 2010 9:31 am
by Jenb
Looks like beginning of August for me...
They called today with a date in July but to soon for me , still need passport and $$.
Re: Just got my balloon angio in SD
Posted: Wed May 19, 2010 9:42 am
by Trine
devinhubbard wrote:My father, a neuro, tried to get me into a study and couldn't, so he started scanning the haacke protocol down here, and found an IR to treat me. We should be referring patients for the venoplasty by mid june. hubbardfoundation.org. Hope this helps.
Hi Devin,
So is there a wait list started to get treatment when/if the time comes?
Trine
Posted: Wed May 19, 2010 12:15 pm
by Jenb
ndwannabe wrote:ikulo wrote:ndwannabe wrote:
I also asked them if they had any patients with negative CCSVI diagnosis. he said they had 4 (out of 15).
I wonder about the rate of 26% that are found without ccsvi.. If that number is from the dopplar or mrv , it sounds "normal" with the known false negative rates. But if they are quoting those negative rates from the "Gold Standard" I would have questions, since most others doing the procedure seem to be running at less than 10 % without blockages or valve problems ..............
Posted: Wed May 19, 2010 12:20 pm
by pklittle
Dr. Siskin uses venogram to rule out ccsvi.
Posted: Wed May 19, 2010 12:22 pm
by pklittle
Jenb wrote:Looks like beginning of August for me...
They called today with a date in July but to soon for me , still need passport and $$.
Jenb, do you know approx. where you were on their list of 60?
Posted: Wed May 19, 2010 3:36 pm
by Cece
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....
Posted: Wed May 19, 2010 4:21 pm
by Rokkit
Keep in mind 15 is not a very large sample size. Their percentage might get a lot higher with a few more patients.