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Posted: Fri Dec 11, 2009 5:48 pm Post subject: Cure
Ozarkcanoer, I realize that CCSVI is not touted as a cure, but being an optimist and determined Mom, I am thinking ahead! I did not intend to imply that CCSVI is a cure, just that I am hoping for one in the future.
Posted: Mon Dec 21, 2009 1:14 pm Post subject: CCSVI testing in metro NY
Does anyone know a center/MD in metro NY who is doing the testing protocol? NYU has a 7 Tesla machine-I emailed them but they haven't called back. Someone must have tried this in NY.
Help!
michele RN
Posted: Mon Dec 21, 2009 8:58 pm Post subject: thanks
The only diagnostic facility specializing in CCSVI screening in NY is in Buffalo-at least 8 hours by car from NY (It is near Canada). With such a hi concentration of hospitals and medical centers and schools in NY city I should be able to find a facility pretty easily you would think!
It is ridiculous.
Thanks for your help. As it still stands there are only 3 screening sites in the US. My friend contacted Dr. Dake at Stanford and was sent a generic letter that they are on hold for a while as is Buffalo till the end of January.
WHY???
michele RN
Joined: Oct 16, 2009 Posts: 830 Location: St. Louis, Missouri
Posted: Mon Dec 21, 2009 9:10 pm Post subject:
msh,
It is my understanding that Dr Dake at Stanford is changing from a pay-as-you-come mode to a more formal clinical study. This has been frustrating, especially for those folks who were already scheduled and were postponed until the formal study.
As for Buffalo, they are in number-crunching mode with their first 500 participants, and I think they will go back to the blinded doppler testing and scanning in early 2010. Buffalo also needs $$$$.
There are only 3 screening sites because CCSVI was only made known to the public by the CTV W5 documentary less than a month ago. Before that it was an MS backwater. The MS societies and doctors and scientists are flabbergasted and haven't had time to get over being dumbstruck by all the uproar.
Joined: Sep 11, 2007 Posts: 2631 Location: southern California
Posted: Mon Dec 21, 2009 9:10 pm Post subject:
Michelle-
since you are an RN, I encourage you to take the research to your medical contacts. Whether you know doctors at the university level or in private practice, this is the only way we are finding locations to test. I know, this seems absurd, but CCSVI is not in the mainstream medical lexicon, and patients need to explain what they are looking for to interventional radiologists, neuroradiologists and endovascular doctors. This is how we've gotten doctors involved at Duke, Stanford, Poland and elsewhere...patients and caregivers looking for answers. It was only last spring I got the research to Stanford. This is new, and we need many hands to make light work- good luck,
cheer _________________ Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS
I agree with cheerleader, you need to be proactive and contact interventional radiologists in your area. You will be surprised how many might be interested in hearing you out, and possibly getting involved.
Posted: Mon Dec 21, 2009 10:47 pm Post subject: here I go!
ok, thank you all for the encouragement!
Tomorrow, I will attempt to call NYU radiology dept, Dr. Coyle at SUNY StonyBrook, and the rabbi's wife where I used to live in Long Beach whose son is a fabulous cardiologist (and whose wife loves my older son). Here goes every connection I have! Besides, I can be a real pain in the ___ (jugular!!haha).
Interestingly, I have brain lesions of the MS variety and severe pain in my left ear for almost 4 years. I started doing research on that and what is coming up is possible carotid or venous compression or problems! Wonder if my brain lesions are influenced by blood flow? I would be a great control subject.
My cousin's cousin is a neuroradiologist up in westchester-he will also be on my list.
Looks like a fun day tomorrow.
Any other suggestions?
michele RN
i need to ask because i am realy confused now, someone tells any radiologist can do the testing, but when i asked the neurologist in Alberta Canada, we have been told it is a special machine and special program. i really need to know the truth, i am willing to go anywhere in North America and i will finance the test if i have too.
as some have noticed Dr Dake is not accepting pts right now and even the neuroligist in BC who says he will do the testing on 100 pts, retrieve the whole thing back telling it is not open.
so i need the truth
many thanks
Posted: Sat Dec 26, 2009 12:39 pm Post subject: stanford liberation procedure
Hi, does anybody know if it is tue that the operations which had been performed in Stanford had been stopped? And if yes, why were they stopped?
best from germany!
Joined: Oct 16, 2009 Posts: 830 Location: St. Louis, Missouri
Posted: Sat Dec 26, 2009 12:46 pm Post subject:
coin,
It is my understanding that Dr Dake is changing his treatment of CCSVI from treating individual patients seeking help with venous malformations, to a more formal clinical study of how best to treat the particular types of venous stenosis found in CCSVI. He hasn't stopped, he is just getting started !! So if you contact Stanford you may get put on a waiting list for the study.
Isn't it amazing, however, that almost all of the patients who have been examined and perhaps treated by Dr Dake have MS? LOLOLOL
In hopes of clarifying some of the confusion, intracranial angioplasty has been performed by interventional neuroradiologists for many years for many indications (occasionally for venous stenosis). Historically, this seems to be one of those procedures that technically worked well to treat the stenosis with little relief of the presenting symptoms (such as tinnitus).
If in fact there bares out to be symptomatic relief from MS by doing this procedure, it is fairly low risk. I encourage you all to follow the science that is yet to be revealed about these 2 diseases (MS and venous stenosis) and there relationship to each other.
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