HUBBARD REGISTRY-YELLOW DOTS

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
bestadmom
Family Elder
Posts: 722
Joined: Mon May 18, 2009 2:00 pm
Location: CT
Contact:

Post by bestadmom » Tue Oct 12, 2010 11:08 am

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

David1949
Family Elder
Posts: 898
Joined: Mon Aug 23, 2010 2:00 pm
Contact:

Post by David1949 » Tue Oct 12, 2010 11:27 am

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

Dave

Cece
Family Elder
Posts: 9313
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece » Tue Oct 12, 2010 12:18 pm

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.

User avatar
Billmeik
Family Elder
Posts: 696
Joined: Fri Nov 27, 2009 3:00 pm

Post by Billmeik » Tue Oct 12, 2010 1:01 pm

anybody know who the vancouver canada site is?

Cece
Family Elder
Posts: 9313
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece » Tue Oct 12, 2010 1:20 pm

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

(edited to clarify)
Last edited by Cece on Tue Oct 12, 2010 1:38 pm, edited 1 time in total.

User avatar
Billmeik
Family Elder
Posts: 696
Joined: Fri Nov 27, 2009 3:00 pm

Post by Billmeik » Tue Oct 12, 2010 1:34 pm

anybody know who the vancouver canada site is?

David1949
Family Elder
Posts: 898
Joined: Mon Aug 23, 2010 2:00 pm
Contact:

Post by David1949 » Tue Oct 12, 2010 2:45 pm

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.

User avatar
bestadmom
Family Elder
Posts: 722
Joined: Mon May 18, 2009 2:00 pm
Location: CT
Contact:

Post by bestadmom » Tue Oct 12, 2010 3:09 pm

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.

User avatar
PanosB
Newbie
Posts: 9
Joined: Sat Jan 09, 2010 3:00 pm

Post by PanosB » Thu Oct 14, 2010 10:38 am

David

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

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

David1949
Family Elder
Posts: 898
Joined: Mon Aug 23, 2010 2:00 pm
Contact:

Post by David1949 » Thu Oct 14, 2010 11:41 am

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."

newlywed4ever
Family Elder
Posts: 255
Joined: Thu Apr 17, 2008 2:00 pm
Location: Michigan
Contact:

Novi & Warren

Post by newlywed4ever » Thu Oct 14, 2010 5:54 pm

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

User avatar
bigfoot14
Family Elder
Posts: 110
Joined: Mon Nov 30, 2009 3:00 pm
Location: State of confusion (Illinois)
Contact:

Post by bigfoot14 » Fri Oct 15, 2010 7:41 am

for all of you in the high plains...

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

User avatar
thornyrose76
Family Elder
Posts: 462
Joined: Mon Nov 23, 2009 3:00 pm

Post by thornyrose76 » Fri Oct 15, 2010 12:47 pm

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. :)

User avatar
garyak
Family Elder
Posts: 314
Joined: Sun May 30, 2010 2:00 pm
Location: grande prairie , alberta,canada
Contact:

Post by garyak » Fri Oct 15, 2010 3:27 pm

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.

User avatar
thornyrose76
Family Elder
Posts: 462
Joined: Mon Nov 23, 2009 3:00 pm

Post by thornyrose76 » Fri Oct 15, 2010 5:13 pm

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?

Post Reply
  • Similar Topics
    Replies
    Views
    Last post
  • Connecting the dots - 43 years of symptoms
    by 1107brc » Tue Dec 18, 2018 9:25 am » in Undiagnosed
    9 Replies
    1021 Views
    Last post by Sweetsue
    Tue Jan 08, 2019 10:11 am