Billmeik wrote:I can't help reading into the things you are saying cheer that you are more in favour of stents across the valves then valve removal. That is a fallacy.
I can't help reading into the things you are saying cheer that you are more in favour of stents across the valves then valve removal.
dania wrote:As having been a patient of Synergy, I am sad to report that Synergy does not follow up with a phone call or email. So they cannot even say what percentage are doing well.
Cece wrote:Welcome to the forum, ooohi. The thing that seems pertinent is that valvuloplasty is being performed by all IRs at all clinics. So all research on CCSVI is research on valvuloplasty. The ISNVD 2012 abstracts had some single center studies that were of interest.
The amount of research can be overwhelming, as can all the anecdotes. When I decided to get CCSVI venoplasty, in 2010, there was less to read than there is now. It's a tough decision, especially if self-paying, but for me I made the right choice. And my issues were the valves in both jugulars, so I had valvuloplasty done, and it was not at Synergy...
From what Cheer has said, she is in favor of saving working valves. Mine were really, really not working. But if the doctor wants to know for sure whether a valve is working or not, he can use intravascular ultrasound to get an actual look at the valves. Otherwise the flouroscopy used during the procedure just shows the veins, which shows area where flow isn't flowing, which can be seen on ivus to be a fixed, thickened valve. Dr. Cumming in Minneapolis, Dr. Ferral in Chicago, and Dr. Sclafani in Brooklyn are the three US doctors using IVUS. Dr. Cumming is originally from Canada. Synergy is an option with experience, but doesn't use ivus on every patient.
I think deciding to get CCSVI treatment is the first big decision, and deciding which provider to go with is the second big decision. Both decisions are important and will affect the outcome. There are many differences between doctors in how they do the procedure. MarkW was just talking about pulling together an FAQ of what patients could ask of the different clinics, and I can see where if we had that done up, I'd link to it now.
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