HUBBARD REGISTRY-YELLOW DOTS

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

HUBBARD REGISTRY-YELLOW DOTS

Postby thornyrose76 » Tue Oct 05, 2010 6:34 pm

Why in the Hubbard Registry are there yellow dots amongst the blue and one red? I asked but they never answered so I am just wondering are they almost ready to begin treating?Anyone know? :lol: :? :P :?
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Postby bigfoot14 » Tue Oct 05, 2010 7:41 pm

I asked about the yellow dots as well.....

however I also noticed that they had recently updated the map...

the update was to remove two locations, there used to be 84, now there's 82
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Postby Cece » Tue Oct 05, 2010 8:43 pm

I compared it to this copy from six days ago:
http://www.thisisms.com/ftopicp-136011.html#136011

Is it Seattle, WA that is gone now? I didn't find any others missing and I am not entirely confident about Seattle. Lots of sites there.

Minneapolis used to be at the top, but dropped to the bottom, and another Minneapolis was added.

Whatever it all means, I am watching closely. :P
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Postby garyak » Wed Oct 06, 2010 11:27 pm

I asked Devin Hubbard, this was his reply;

Hi Gary,


Blue means, they've signed our NDA. Yellow means they are close to being able to treat. Red means they're up and running.


Hope you're feeling better every day



Devin Hubbard
Applied fMRI Institute
10065 Old Grove Road
Ste 103
San Diego, CA 92131
858-444-3595
fax 858-444-3599
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Postby nellie » Sun Oct 10, 2010 1:55 pm

I just got some info from Arlene Hubbard about the registry. I had asked for the Drs. names in Mn. She provided me with only 1. I saw 4 entries on th website for Mpls. & St. Paul. I questioned it & she responded with 2 more but also a note that bothered me. She said alot of the Drs. are showing interest but not following thru with the registry. She mentioned that people like myself might help by calling & showing interest. Just a heads up if you are waiting for the RED FLAG we need to get their names & start calling I guess. Iknow I will!!!!!!
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Hubbard Sites

Postby MS_HOPE » Sun Oct 10, 2010 2:15 pm

Nellie, I agree with you, but if we don't know the names of whom to call, it's difficult.

I saw that Cary, NC was one of Hubbard's "red dots", and found one interventional radiologist from that town listed on the SIR (Society of Interventional Radiologists) website. I called their office to ask if they might be getting involved with CCSVI treatment, and was told a definite "No". So, I'm wondering, if not they, then who is?
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Postby nellie » Sun Oct 10, 2010 2:18 pm

In order to get the names you have to email Hubbard Foundation & they will gladly give them to you. I know on their website they did say to contact them for the names if interested. I hope that helps.
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Postby Cece » Sun Oct 10, 2010 3:11 pm

MS_HOPE, the office staff might not even know that the IR applied for the registry. This was the case in five out of six names given to someone else here for the area he lives in. (Only one of them knew about it.)

Nellie, excellent about the MN docs, not so excellent about the docs not following through with getting in to this! I still think the SIR statement in support of CCSVI holds a lot of sway with the IRs, they'll all come around eventually, hopefully before this is completely routine.
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Postby nellie » Sun Oct 10, 2010 4:18 pm

Cece, I'm with you on that one. Tomorrow I will call the 3 I have & let you know any positive results. The 1 name she gave me has 2 radiologists with the same name in Mpls. so I responded to her to ask which one.
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Postby bigfoot14 » Sun Oct 10, 2010 5:40 pm

Cece wrote:MS_HOPE, the office staff might not even know that the IR applied for the registry. This was the case in five out of six names given to someone else here for the area he lives in. (Only one of them knew about it.)


That was me...Cece is right, I called the 6 Dr's that the Hubbards sent me, and in 5 of the Dr's offices the staff had no idea that the IR had contacted the Hubbards about the registery.
Also, slightly disheartening, in 3 offices they had no idea what CCSVI was, I had to spell it out and then explain it.... but the 6th has been doing the procedure since August and my wife has an appointment with him on Oct 27.

and although I left my name & number with the other 5, only one other Dr called me back and told me he may be ready to treat by january or February
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Postby JCB » Sun Oct 10, 2010 6:13 pm

I contacted one IR in Minneapolis for follow up care after being treated in Albany and they agreed. Got the names of the Minneapolis IR's from the Hubbards.
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Postby nellie » Sun Oct 10, 2010 6:13 pm

Thanks for the info bigfoot14. I would be thrilled to find one knowledgable enough about it & also treating it. Sounds like the odds are against us on that judging from your experrience. Glad to hear you found one & your wife got an appt. Let us know how it goes.
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Postby nellie » Sun Oct 10, 2010 6:18 pm

JCB---check your pm.
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Postby Cece » Sun Oct 10, 2010 7:45 pm

JCB, wow! Fantastic news on the follow-up care.

When you think about how far this has all come how fast, it is astonishing.
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Postby JCB » Sun Oct 10, 2010 8:13 pm

It really is astonishing how far we have all come in a short amount of time. I am hoping that the more of us that have been treated seek follow up care locally, it will bring more IR's into the fold.

@Nellie - I did not receive a PM
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