Anyone get an MRV here in Minnesota?

JCB · Post by **JCB** » Wed Sep 15, 2010 7:28 pm

Add me to that PM list if you would, please. Just got back from Albany, would love to go to someone local for a checkup.

Will have a longer post on the procedure, but am wiped out currently.

Thanks Jim
Maple Grove, MN

nellie · Post by **nellie** » Wed Sep 15, 2010 8:33 pm

Thanks,Cece!

BadCopy · Post by **BadCopy** » Thu Sep 16, 2010 6:46 am

JCB wrote:Add me to that PM list if you would, please. Just got back from Albany, would love to go to someone local for a checkup.

Will have a longer post on the procedure, but am wiped out currently.

Thanks Jim
Maple Grove, MN

If you could let me know also. a local check up would be nice. Or just let me know wheryou get the info and I will check it out myself. Very good info Cece, thank you.

Kathyj08 · Post by **Kathyj08** » Thu Sep 16, 2010 7:22 am

Does anyone know if you must have a definitive ms diagnosis for these IR's wanting to be covered under Dr. Hubbards IRB? I have had the procedure once and had severe stenosis and have since re-stenosed. I didn't know what the must haves or have nots are.
Any info is greatly appreciated!
Kathy

Cece · Post by **Cece** » Thu Sep 16, 2010 7:44 am

Any treating physician may refer his/her patient with suspected CCSVI, including but not limited to MS.

http://www.hubbardfoundation.org/CCSVI_ ... ction.html

Good news there!

I am not as sure if they'll be able to include data in the registry on patients having their second procedure, but I am assuming that they'll still be able to treat such patients.

JCB, Bad Copy, yes, you are on the pm list too.

There is also a Cedar Rapids, Iowa, site that applied. They're just under five hours from Minneapolis. Also a number of sites near Chicago.

I was through the roof at a Minneapolis site being listed, then to have that followed by St.Paul and Eau Claire! We've got sites to spare!

bmk1234 · Post by **bmk1234** » Fri Sep 17, 2010 8:21 pm

Due to the good work of a fellow TIMS member, there is another doc in West Central MN that has just applied also. Not on the map yet. I'll let them provide the details.
bmk.

Trish317 · Post by **Trish317** » Fri Sep 17, 2010 8:25 pm

Cece wrote:
Any treating physician may refer his/her patient with suspected CCSVI, including but not limited to MS.
http://www.hubbardfoundation.org/CCSVI_ ... ction.html

Good news there!

I am not as sure if they'll be able to include data in the registry on patients having their second procedure, but I am assuming that they'll still be able to treat such patients.

JCB, Bad Copy, yes, you are on the pm list too.

There is also a Cedar Rapids, Iowa, site that applied. They're just under five hours from Minneapolis. Also a number of sites near Chicago.

I was through the roof at a Minneapolis site being listed, then to have that followed by St.Paul and Eau Claire! We've got sites to spare!

Cedar Rapids, Iowa????!!!! The news keeps getting better and better!!!!

thornyrose76 · Post by **thornyrose76** » Sat Sep 18, 2010 12:00 pm

I'm in Winnipeg Manitoba and being just northof this region, and being in rough shape (wheelchair) I would much prefer to take a shorter plane ride than a longer journey it would take to get to albany. How long will it take for these sights to start testing and treatment? Anyone venture to guess?

BadCopy · Post by **BadCopy** » Sat Sep 18, 2010 6:41 pm

bmk1234 wrote:Due to the good work of a fellow TIMS member, there is another doc in West Central MN that has just applied also. Not on the map yet. I'll let them provide the details.
bmk.

Yup, BMK had a good letter that he let me use that was a brief overview of the Hubbard IRB. I sent it to an IR that has been interested in CCSVI but a little unsure of how to get involved with all the protocols, IRBs, etc. Well he cc me the email he sent to the Hubbard Foundation letting them know he wants to be a part of it. I don't know how the application process works or how long it takes but we should see another balloon on the map "around" the Alexandria area in the future.

Cece · Post by **Cece** » Sat Sep 18, 2010 6:50 pm

I went to look at it again, hoping for an Alexandria dot, and instead I found one dot has turned red because it has been approved. It's Applied Functional Mri Institute, is that Hubbard's own site and nothing new?

Yep, googled it, it's Hubbard's. Drat! For a second there I thought there'd be approvals that quickly. A bit optimistic!

BadCopy · Post by **BadCopy** » Sat Sep 18, 2010 6:57 pm

pretty sure that is Hubbards location

1hunter · Post by **1hunter** » Sun Sep 19, 2010 2:00 pm

Eau Claire, That is Great!!! When will we know more??

Cece · Post by **Cece** » Sun Oct 03, 2010 9:53 am

bmk1234 wrote:Due to the good work of a fellow TIMS member, there is another doc in West Central MN that has just applied also. Not on the map yet. I'll let them provide the details.
bmk.

On the map there are now showing three in Minneapolis and one in St. Paul. I think the West Central MN doc must be being counted as Minneapolis?

Also on the map three sites in other parts of the country have turned yellow. No idea what yellow means!