This Is MS Multiple Sclerosis Community: Knowledge & Support

I would love a thread with a list of all the doctors interested in CCSVI, where they are located, what their specialty is and their contact info.

I would also love some sort of template to use via email or snail mail to contact some doctors here at Yale New Haven Hospital. I have no idea where to begin never mind what to say. I hope that this isn't asking too much.

I feel like the only doctor doing something about this is Dr. Dake and Dr. Zamboni. I bet their are others out there but being new to the site I can't seem to find their names or locations.

Javaneen

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javaneen

There are no other doctors in the U.S. at this time that I have read about on this site.

However, MRHODES40 wrote this under the CCSVI Skeptics topic -
"A cardiovascular doctor that might be an interventional radiologist is similar in background to Dr Dake".

Maybe you could check out doctors in your area that fit this criteria.

We live in PA, so traveling to California is almost impossible for our budget. If we could, we'd be there next week.

The doctors currently looking at this paradigm are:
Dr. Paolo Zamboni, University of Ferrera, Italy
Dr. Michael Dake, Stanford University, California
Dr. Marian Simka, Department of Angiology, Private Healthcare Institution SANA, Pszczyna; Poland
Dr. Claude Franceschi, Hospital Saint Joseph and Pitié- Salpétrière, Paris, France

Patients and their loved ones need to find more doctors. I e-mailed Dr. Dake the research last March. I'm still e-mailing doctors. Look to interventional radiologists, vascular specialists, universities with teaching hospitals, primary care physicians who are open to new paradigms...
My mother carries copies of Zamboni's research with her (she's in the New Haven area) and gives it to all her doctors and friends, asking them to help her find more researchers. We need to be the foot soldiers on this one.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

[quoteMy mother carries copies of Zamboni's research with her (she's in the New Haven area) and gives it to all her doctors and friends, asking them to help her find more researchers. We need to be the foot soldiers on this one.
cheer[/quote]

Cheer, I live in the New Haven area and work at a doctors office. I am about to start circulating some of the research. Do you know which doctors she has already contacted? Did any of them seem interested?

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javaneen

I know...that was my wink to you, javaneen
So far, no specific info (she has friends delivering the research at Yale/New Haven- no names yet)...the more docs that hear about this from a variety of people, medical professionals, MS patients, laypeople...the more apt they'll be to read the research. Maybe discuss it with their friends. If I get any leads, I'll let you know.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I just searched vascular specialist at Allegheny General Hospital in Pittsburgh, PA and I came up with Interventional Neuroradiology and Cerebrovascular Neurosurgery in addition to some other fields (which is under their Neuroscience Center). I'm not that great in understanding all the differences between these specialist. Can you direct me to which I should start with (or am I totally off base)?

"Cerebro" and "neuro" refer to study of the brain. The veins to be examined in CCSVI are the jugular and azygos, and these come under the study of cardio-thoracic doctors- since it's neck and spine. (Dr. Dake is a cardio-thoracic interventional radiologist and endovascular surgeon). However, a call to this interventional radiology at the neuroscience center could still be made...they might be interested in looking at the research, since the damage happens to the brain and spine.

Here's where I spend my energy in Pittsburgh-

UPMC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Go Penguins!!!!

Ok, here's where all this gets me. I can't help but see parallels with trying to get abx. Did Jeff and Marie have to deal with health insurance coverage issues? Needing a referral? Or do you just fly out to Stanford and give them your Blue Cross card and you're in?

I thought I read somewhere that something was happening with this in Buffalo, NY. Did I imagine that?

Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Thanks, Cheer. I'm so glad I asked.

For those looking for possible leads and such go to thread spreading the word...link below.



http://www.thisisms.com/ftopict-7225.html

Jeff had bad vascular headaches. He was self-referred to Dr. Dake. His insurance paid, after it was pre-approved (Blue Shield needs to preapprove the MRI and MRV) After it was found that he had jugular vein occlusion, the stent procedure was OK'd.
Jacobs Neurological institute at The State University of New York in Buffalo sent some patients to Italy to see Dr. Zamboni, but I do not know if they are testing/treating anyone themselves.
Jeff had been tested for cpn, lyme and a variety of spirochetal infections as well as antiphospholid antibodies...when those came back negative, we had to pay (since these tests were self-referred) Antibiotics and blood thinning were not indicated for him, but stent surgery was.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

hi! I am speaking from Dayton Interventional Radiology. We have been approved to participate in the CCSVI treatment research. We have a very experienced neuro radiologist, Dr.Syed that performs the procedure. He is very interested in helping MS patients in the best way he can. I hope we can get listed! Thank-you!

Welcome, DIR. This is a thread from a few years ago, so rather out of date. It's good to know there is now a provider in Ohio offering the procedure!

this is your website?
http://www.daytonir.com/LiberationTreatmentCCSVI.aspx

And Dr. Syed is a neuroradiologist? An interventional neuroradiologist? How many CCSVI procedures has he performed to date? What is his comfort level with investigating or treating the dural sinuses? If he has a background in neuroradiology, I would be interested in hearing more about that. I have been treated myself with good results.

And isn't this interesting! Three years ago, there were four doctors investigating CCSVI. How many more are there now!

cool archival thread from 2009. The list now would have hundreds of names

to Cece:
Thank-you! We are also just as excited to help MS patients in the best way we can. Yes, that is our website, which was just recently updated to include a little more information Dr.Syed and a testimonial on a patient that got the procedure done at our clinic.
Dr.Syed is a interventional neuroradiologist with a board certificate in 3 other areas. Our clinic recently started providing the liberation treatment, so Dr.Syed has performed about 8-10 procedures so far, all with positive results. We have a cardiologist technician that is also working with us, who I will confirm my answers with, so that I can deliver them to you.
I am very happy that you decided to get the treatment and have positive results. I will inform you more about our doctor as soon as possible. I am glad you take interest. Thank-you once again!