This Is MS Multiple Sclerosis Community: Knowledge & Support

Has anyone compiled a list of 'approved' ultrasound facilities in the US that know how to do the correct protocol for follow up dopplers post-agioplasty?

I had my procedure done in Tampa about a month ago and have not really seen improvements. I want to have the follow up to be sure there was no restenosis. I saw that Dr. Sclafani recommends follow up dopplers at 1-3-6 months. I could go back to Tampa but it's a 4 hour trip each way and was hoping to find a facility closer to home (Fort Lauderdale).

It seems as if I am not the only one in this situation and until more facilities get trained in this protocol, do we have any current information by city that could be posted?

Thank you and thank you for all the incredible information on this site - there is no better place to get good information about MS I appreciate all the forum admins who do this work. Andrea

No you are one among many since we are many treated and only have a handful of doppler places in the country that do the Zamboni protocol. I also saw no improvements making it hard to know if one restenoses. I just plan on getting a regular doppler just to make sure there are no clots and ask if they would please try and do the zamboni protocol. If I felt worse I might travel further to one of the few places that claim they do use the protocol.

Thanks for your reply - Maybe one of the forum admins can take up this project. I know on the LDN forum they have a list of doctors who prescribe and treat with LDN - we need to start a list of places here. Any takers??

1-3-6-9-12 and every 6 months thereafter. His is the most conservative schedule I've seen and I fully back it. The idea is to catch restenosis before there are symptoms or relapses. A relapse is neurological damage, not to be risked IMO if access to something as simple and cheap as a doppler ultrasound can prevent it.

Yes, we need such a list, and we need it as a sticky here (and if we need to reduce or merge some of the stickies to make room for it, I'd like that too). Right now there are far too few doppler ultrasound technicians who know how to do a CCSVI doppler. And doctors who are treating CCSVI are not all doing so openly.

Atlanta and Arizona have doppler-imaging only facilities:

CCSVI-Atlanta doppler imaging
http://ccsvi-atlanta.org/
404-941-2000
* does not take insurance

but I haven't got the AZ one handy.

This doc is in Miami, he's listed himself in the sirweb find-a-doctor listings as doing CCSVI:

1.Barry T. Katzen, MD, FSIR - (786) 596-5990
Miami, FL - Baptist Cardiac & Vascular Institute

As it is, with a four-hour commute for follow-up care, you're actually better off than most.

They charge a whopping $500 and don't bother with insurance which I guess they can get away with until more places get trained. Insurance companies would probably only pay $100 for it. The problem I have found is lack of interest, I have contacted a number of facilities.


http://www.azdoppler.com/For_Patients__CCSVI_.html

Thank you cece - I'll call Dr. Katzen's office tomorrow and see if he is available for follow up or can recommend someone. I know that a 4 hour drive is better than most people have but I can't make that trip alone in a single day so it means an overnight stay and extra expense. But the facility charges $200 for the test which I think is not too bad so if Dr. Katzen can't help, that's what I'll have to do.

I would be happy to help compile a list if people would like to send the info - I'm going to write to a few of my FB friends who are active in CCSVI stuff and see what they can add. Thank you again.

After all this time, I should know the answer to my question and I might even have the information saved somewhere but is there a link to the ultrasound protocol?

My darling man is having a follow-up ultrasound next month but I'm concerned that they aren't going to know what they're doing or what to look for. He had the procedure in Albany but he's having the ultrasound locally where he lives in Iowa.

I also think he's restenosed because the few improvements he experienced are gone and now he's having some new symptoms like numbness in his fingertips.

I want the ultrasound done properly so we can figure out what, if anything, to do next.

I have it in a pdf file. If you PM me with your email address I'll send it to you.

Sorry to hear that, Trish. You're right, I wouldn't bet on the local doc having much experience with the CCSVI ultrasound. Hopefully the doc is good enough. Let us know how it goes?

Link to doppler protocol

http://www.voyager2.com.au/index.php?op ... &Itemid=10

On the west coast where I live I have only found the Arizona Doppler Specialist so most of us end up using regular doppler for followup or I suppose somebody might opt for an MRV though I am not considering that.