Cece wrote:Good luck to you, tiltawhirl! I think you're making a good choice to get treated but then I made the same choice too.
If I may ask, if you are planning to go to Albany regardless of the doppler result, then why get the doppler? It is only the 'gold standard' of noninvasive diagnostic methods. The true gold standard is the ivus+venogram combination but that can only happen after your femoral vein has been punched and a catheter inserted. (Worse part of the procedure, right there! It is done before any pain medication is delivered.)
Cece wrote:I remember saying back in 2010 that when you choose your provider, you choose your treatment. I would suggest that he have no expectations that the doctors at Albany would change their techniques based on patient request! You have to trust your doctor once you get that far, which is why the option to choose is early on, when choosing a doctor.
At Albany, they do not use ivus, they do not enter through the saphenous vein, they do not investigate the trunk veins other than the azygous, and they do not tear the vein annulus when treating.
MarkW wrote:Hello Tilt,
I travelled from Oxford England to Brooklyn for my second procedure and it cost 10,000 usd in June 2011, so I am biased. The issue I see it that flying afterwards (I stayed on the ground in USA for 20 days) and getting follow up is best done with a local clinic. On the plus side going to Brooklyn means you get treated by the leading global practitioner (expert plumber he says) as soon as he is well and operating again.
I do not know where you live but check out the 'gold standard diagnosis' thread for the closest clinic to you.
Personally I did not get a Doppler scan prior to my first catheter venography but that was back in June 2010.
Cece also went to Brooklyn for her second procedure.
Trust you find the local phone numbers for American Access Care, Brooklyn on the web.
Cece wrote:I went with Dr. Sclafani for my first and second procedure, Mark. I chose him for the same reasons that I recommend him to others: use of IVUS means a more thorough & safer procedure, extraordinary accessibility to his patients before and after the procedure through email and his thread here at TiMS, and his techniques are well thought out.
Albany has a great deal of experience. Dr. Siskin has said he is waiting for research to be published by the doctors who are saying that the renal stenosis is important in CCSVI. This is not unreasonable. He is doing the procedure as Dr. Zamboni's team did it according to Dr. Zamboni's published research. Other doctors are going further, looking at the ascending lumbars, looking at the effect of renal stenosis on the flow through the azygous (which was also seen clinically by Dr. Arata when he found a patient whose renal vein flow was blocked and all the flow was diverted into the cerebrospinal drainage, which is not good), looking at the dural sinuses. Dr. Sclafani posted the other day about treating the vertebral vein in a patient whose jugular had occluded. A doctor is on the forefront if he is treating CCSVI at all, and Dr. Sclafani is on the forefront of the forefront, if that makes sense.
I can see why the tech would say CCSVI is like pregnancy, you either have it or you don't. I'd assume she was referring to the doppler testing. If you have two criteria met, you have CCSVI. If you have one criteria, you do not. This is based on Dr. Zamboni's finding that among healthy controls, there would sometimes be one of the criteria, but never two. It would be good to have more research backing this up. I would disagree with the statement that CCSVI is either something you have or something you don't, because like many things it would seem to be on a continuum, with some people having no outflow blockages and some people having a small degree of outflow blockages and some people having higher-grade blockages and some people having near-total blockages in the jugulars. We don't know where on the continuum CCSVI causes trouble for people, or if there is a susceptibility among some of us that would cause us to be more affected by our CCSVI, or all the hemodynamics that are involved.
Let us know what you find out! I was 3 criteria out of 5 for CCSVI, and venogram plus ivus showed 99% blockage in one jugular and 80% in the other. What sticks with me is that, if I hadn't been rooting around on the internet and learned about CCSVI, I would have had no reason to suspect that my jugulars were blocked.
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