Anyone get an MRV here in Minnesota?

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

Anyone get an MRV here in Minnesota?

Postby Cece » Fri Jan 08, 2010 8:13 pm

I'm in Minnesota (Twin Cities area). If anyone here has either had success or been spectacularly shot down with getting an MRV, could you pm me? I'm looking for specific interventional radiologists to either pursue or avoid.
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CCSVI in MN

Postby yellowgenius » Fri Sep 10, 2010 2:03 pm

I live in MN also and I have not had any luck either, have you found anything new out?


Thank you,

Allen
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Postby Cece » Fri Sep 10, 2010 3:26 pm

Allen, no, nothing much happening in MN, unfortunately. I wonder though if the recent SIR position statement in support of CCSVI research will encourage any IRs to get in on this.
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Postby nellie » Fri Sep 10, 2010 5:24 pm

I live in Mn. & have had no luck.I had an appt. with St. Paul Radiology until they called back & cancelled after a visit with Mayo Clinic. They had done 1 test previously the receptionist said but found nothing so I was a little concerned with them doing it & not following protocol.
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Postby BadCopy » Fri Sep 10, 2010 10:03 pm

I believe it was St Paul Radiology where I had a Transcranial done by the assistant to Dr Ketcham. He found nothing, then I went to Albany NY and during a venogram they found left and right blockages. Imagine that :)

I also sent over 125 letters to vs and ir here and really got no response. Had 1 on the line but it appears he must have been talked out of it.
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Postby nellie » Sat Sep 11, 2010 6:36 am

I, also, went to a vascular surgeon in Mpls. after sending him a letter marked private. He called & set up an appt. to come in. After making the trip & paying the co pay upon arrival he had checked with his IR's & Mayo and he was advised to not pursue it. He had printed me info. about the 2 problems that we all know about. He did state if he was me he would get his name on a waiting list, though. He refuses to do follow up care, also. I sure hope it won't be long & they all come around. We really need follow up at home!
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Postby MegansMom » Sun Sep 12, 2010 6:24 am

Try the University of Minnesota Hospital- there are many IRs listed from there on the SIRS website.

www.sirweb.org

I found a great IR dept at the University of FL Gainesville FL- it seems at academic centers the focus is SCIENCE !

How novel ! ( she says rolling her eyes)
Cat (Catherine Somerville on FB)
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby nellie » Sun Sep 12, 2010 6:51 am

I did email & call University of Mn. and talked to a Vascular Dr. there. He referred me to Mayo Clinic in Rochester which is a big mistake . I've been in contact with them more then once and they refuse to touch it without trials completed. Mayo runs this entire state it seems. Every lead I've had invoves checking with Mayo. I won't give up, though. Thanks for the list Megansmom. If you find tratment in Gainsville can you let us know if possible. Thanks.
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Postby Cece » Sun Sep 12, 2010 6:33 pm

Now here is something!!!

http://tinyurl.com/2wv995m

CCSVI Registry Sites
Interventional radiology sites pending. Hubbard Foundation, sponsor of Multi-center Registry for CCSVI Testing and Treatment. Number of sites enrolling patients: none. As soon as the sites are ready, their contact information will be posted

Minneapolis is on the list!!

These are sites that have applied to be covered under Dr. Hubbard's IRB.

I can't wait to learn more!

I started this thread back in January, it was within my first ten posts. Things have changed tremendously since then.
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Postby nellie » Mon Sep 13, 2010 7:09 am

Cece, yes things are changing for us. Please keep us posted on the upcoming sites. I'm so excited. Thanks!
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Postby Trish317 » Mon Sep 13, 2010 8:07 am

Cece wrote:Now here is something!!!

http://tinyurl.com/2wv995m

CCSVI Registry Sites
Interventional radiology sites pending. Hubbard Foundation, sponsor of Multi-center Registry for CCSVI Testing and Treatment. Number of sites enrolling patients: none. As soon as the sites are ready, their contact information will be posted

Minneapolis is on the list!!

These are sites that have applied to be covered under Dr. Hubbard's IRB.

I can't wait to learn more!

I started this thread back in January, it was within my first ten posts. Things have changed tremendously since then.


This is such wonderful news!
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Postby thornyrose76 » Mon Sep 13, 2010 12:38 pm

Cece wrote:Now here is something!!!

http://tinyurl.com/2wv995m

CCSVI Registry Sites
Interventional radiology sites pending. Hubbard Foundation, sponsor of Multi-center Registry for CCSVI Testing and Treatment. Number of sites enrolling patients: none. As soon as the sites are ready, their contact information will be posted

Minneapolis is on the list!!

These are sites that have applied to be covered under Dr. Hubbard's IRB.

I can't wait to learn more!

I started this thread back in January, it was within my first ten posts. Things have changed tremendously since then.


Does this mean one or several IR's will be doing both testing and treatment in Minneapolis, have I got that right? When will that be I wonder? Soon?
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Postby Cece » Mon Sep 13, 2010 3:30 pm

thornyrose76 wrote:Does this mean one or several IR's will be doing both testing and treatment in Minneapolis, have I got that right? When will that be I wonder? Soon?

Yes, in Minneapolis, along with many other sites across the US. Dr. Hubbard shared the locations of all the sites that have applied to be participate in his IRB. If the Minneapolis clinic is approved, they'd then have at least one IR performing CCSVI treatment.

Here's the info on what is required of a clinic to participate in Hubbard's IRB:
http://www.hubbardfoundation.org/CCSVI_ ... ction.html
* they have to join the ISNVD
* they have to be a physician trained in catheter venography
* they have to pay a small fee to maintain the IRB and database
* they must be able to refer to an offsite, objective MRI facility capable of running the Haacke protocol on a 3Tesla MRI (preferred)
* they must follow up patients at 6 and 12 months with MRIs
* they must follow up with quality-of-life questionnaires at 1, 6, and 12 months
Additional points:
* as it is a registry and not an experimental study, the participating physicians will bill the patient or the patient's insurance
* Hubbard foundation will collect the data after patient identifiers are removed and analyse and report findings
* purpose of the registry is to collect information on how common CCSVI is and if MRI and clinical improvements after venography are significant and sustained

No idea how long it'll take before this Minneapolis clinic is underway with CCSVI treatments. Dr. Hubbard only just received this IRB approval on September 2nd. Then the MRI technicians have to learn how to do the protocols; it says that "Dr. Haacke’s team will assist in getting them up and running smoothly." But it is exciting!!! Not sure how many Minnesotan MSers there are but I want every one of us who wants treatment to get treatment.
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Postby nellie » Mon Sep 13, 2010 5:24 pm

Thanks Cece for all the info. I'm from Mpls. & am so excited about this as traveling is so hard for me & follow up is so important.
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Postby Cece » Wed Sep 15, 2010 8:01 pm

!!!!!!!!!!!!!!

8)

A St. Paul site has been added to the Hubbard map as well as an Eau Claire, WI, site!

Exciting times!

Nellie, if these clinics get qualified and their info is posted, I'll pm you asap.
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