This Is MS Multiple Sclerosis Knowledge & Support Community

David,

It does include treatment, but the IR has to sign on with the registry and promise to do all of the follow-up with the Haacke protocol testing. There's no set treatment protocol.

MB

Michelle, Thank you for that info and for all your work at CCSVI Alliance.

Dave

It makes sense that there's no set treatment protocol, since the docs are all doing it however they think best (stents, no stents, different balloon sizes, etc). So the data generated won't be as clean as it could be if the different sites were somehow standardized. But it will still be data! And it will still be MSers getting treated. I'm happy enough.

anybody know who the vancouver canada site is?

I am 100% sure it is False Creek. But I have MS, so I am never 100% sure of anything.

(edited to clarify)

anybody know who the vancouver canada site is?

I guess I'm happy that there isn't a standard protocol for treatment at this time. What protocol would it be? I don't think anyone knows what works best yet. As long as they are tracking results maybe one doctor's protocol will be more successful than the others and then that will become the standard.

The doctors need to compare notes too.

I recently heard that Sinan in Kuwait is getting 98% patency rate at 3 months w/18mm balloons, which are bigger than are being used here. He also routinely "cleans out" the azygos as a precaution to make sure there aren't any webs. I don't think anyone else is getting results like that, with or without stents.

There is so much learning to do and it's very exciting to be part of the science.

David

From reading your posts i can guess that you live in Michigan.

The Hubbard foundation map has Novi turned to yellow today...

PanosB Thanks for the info. I'll look into that.

BTW Since the Warren Michigan site dropped off the map I emailed the doctor there and asked him what happened. This was his reply:

"I did not remove myself from the registry...thanx for the lead...I will follow up and hopefully have it corrected."

This is good news about 2 places in Michigan. There may be a 3rd in Grand Rapids, also!

for all of you in the high plains...

one of the dots turned yellow in Minneapolis.....

that's great news, even though I'm stuck in Canada, but travel wise I'd rather be treated closer to home(Winnipeg)- Two hour travel is better than a plane change and several hours travel.

Billmeik wrote:anybody know who the vancouver canada site is?

It is False Creek, they have an IR lined up to do the procedures. This is what Devin Hubbard and his mon Arlene told me 3 weeks ago.

Yeah but the Canadian/provincial gov't isn't allowing the procedure to be done here or is it going to be bc false creek is a pay-out-of-pocket service?