Anyone know - is Mayo on board with CCSVI and MS connection?

SaintLouis · Post by **SaintLouis** » Thu Mar 18, 2010 2:08 pm

I wondered if there is anyone on the board who sees docs at Mayo and happens to know if they have "embraced" this yet or not or what their stance is?

Anyone know first-hand?

Cece · Post by **Cece** » Thu Mar 18, 2010 3:21 pm

Maybe do a search on it? I remember someone saying they went to a Mayo clinic and that the neurologist matter-of-factly asked if they wanted an MRV too. Would that it had been that easy at my clinic!!

(My memory is vague, though, so the details on this might not be right....)

kjwxau · Post by **kjwxau** » Fri Mar 19, 2010 4:51 pm

My girlfriend out in Chicago goes to Mayo. She goes and sees a female who is a Devic specialist. I had discussed CCSVI with her before she left and she was very interested and I wondered since she had devic if the azygos was involved. Her specialist was hostile to her when she brought it up so she did not pursue it. I asked if I coudl go with her but her husband got off work. It would have been worth it to fly from Buffalo to the Mayo.

WeWillBeatMS · Post by **WeWillBeatMS** » Fri Mar 19, 2010 6:57 pm

At the end of January I mailed out about 20 individually addressed letters to physicians, mostly interventional radiologists, in Florida. About 10 of those letters went to IRs at the Mayo Clinic in Jacksonville, FL. I never got any response from any of the doctors at the Mayo Clinic though. I should probably hop on the phone to try to follow up with some of them.

WeWillBeatMS

Vhoenecke · Post by **Vhoenecke** » Fri Mar 19, 2010 8:37 pm

I phoned the Mayo in Rochester the day after the news broke on W5. I asked if they would look into this procedure and they said it was too controversial. I asked if they would look to see if I had trouble in my neck veins and they said not if I was an MS patient. I said I was surprised because I thought they were ahead of the conventional treatments. They said MS patients would not be treated for CCSVI at the Mayo Clinic.

Weird!

Val

Cece · Post by **Cece** » Fri Mar 19, 2010 9:30 pm

Vhoenecke wrote:I asked if they would look to see if I had trouble in my neck veins and they said not if I was an MS patient.

Isn't that a form of discrimination?

frodo · Post by **frodo** » Sat Mar 20, 2010 10:51 am

Mayo people are the biggest proposers of the autoimmune-alone theory. Nobody is more upset by the CCSVI theory than them. Their whole work of years goes directly to the garbage. Do not expect anything positive from them.

Vhoenecke · Post by **Vhoenecke** » Sat Mar 20, 2010 6:42 pm

Yes CeCe it is a form of discrimination. The gal that was a receptionist and was acting as the go between was quite shocked. She told me she couldn't actually believe what they were saying. I said this is quite new and I thought the Mayo Clinic prided itself on being new and inovative. Oh well! Time to move on.

Val

SaintLouis · Post by **SaintLouis** » Sun Mar 21, 2010 3:08 pm

Thanks for the replies, sounds like Mayo clinic is not a good option for getting help.

ozarkcanoer · Post by **ozarkcanoer** » Sun Mar 21, 2010 4:07 pm

Saint Louis,

Go to the "Buffalo CCSVI Study" Facebook page. Look for the posting on the CCSVI MStery Picnic in Edwardsville Illinois. My sister-in-law and I are throwing this picnic fundraiser for the BNAC study.

I have found a neuroradiologist here in St Louis who wants me to have the CCSVI testing done at BNAC and he will consult with me about the results. This could be an option for you. I can't reveal any names right now but this guy is a professor at Wash U med school.

Anyway, look at the CCSVI MStery picnic party invitation and if you can make it you are welcome to the party !!!

ozarkcanoer

jess · Post by **jess** » Sun Mar 21, 2010 4:57 pm

hi ozark ill be seeing dr ann cross at wash u in st louis soon i hope shes part of this

ozarkcanoer · Post by **ozarkcanoer** » Sun Mar 21, 2010 5:58 pm

jess,

I know about Dr Ann Cross but she is not my neuro. But I KNOW she knows about CCSVI !!! I hear she is a great doctor. I have friends with MS who see her. I don't know what her feelings are about CCSVI. The neuroradiologist who I contacted is a surgeon. He told me that I would get better CCSVI test results from BNAC. He had scheduled an MRV for me but it was cancelled when Buffalo announced their CCSVI testing program. So I am playing another waiting game. I hope I will be scheduled to go to Buffalo soon.

ozarkcanoer

chort1313 · Post by **chort1313** » Mon Mar 22, 2010 5:50 am

Ozark, I'm sorry I missed your party - too many things going on! Hope you guys were able to raise some $. It was a yucky weekend!

I see Dr. Becky Parks at Wash U, who is part of the MS Research team at Wash U. I have an appointment in May with her (just my 6 monther...) and I hope to bring up "CCSVI" with her then.

Also, I'm very involved with the Gateway MS Society - I won a tour of the MS Resarch lab on May 5th!! I'm wondering if there's any CCSVI research going on there! I'll let you know what I find out!

Chort

ozarkcanoer · Post by **ozarkcanoer** » Mon Mar 22, 2010 6:31 am

chort,

Our MStery picnic for BNAC isn't until June !!! You haven't missed anything ! Go to the "Buffalo CCSVI Study" Facebook page and the evite is 2nd from the top.

ozarkcanoer

SaintLouis · Post by **SaintLouis** » Mon Mar 22, 2010 5:57 pm

Thanks Ozarkcanoer...I hope you are able to get your scans soon. By chance are you going to our neuros' presentation in Frontenac in April? CCSVI is on the list of topics to dicuss!