question for Colorado MS'ers and CCSVI

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question for Colorado MS'ers and CCSVI

Postby highhopes » Wed Dec 23, 2009 11:35 am

i am meeting with my neuro next week to find out his feelings on CCSVI and the liberation treatment. so, fingers crossed on that! ultimately, i want the doc to write me a prescription for an ultrasound and a MRV if the ultrasound shows refulx.

my question is: has anyone from or around denver pursued and received any treatment related to CCSVI and MS? I have no model to work with and any help would be greatly appreciated with regards to obtaining the liberation treatment in the denver area...

i thank you in advance for any help you can provide :wink:
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Postby ikulo » Wed Dec 23, 2009 4:54 pm

Hey Highhopes - if you get anywhere please let me know. I am also in Denver.
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Postby highhopes » Wed Dec 23, 2009 5:21 pm

i will. i have dr. bowling as my neuro, and with him being closely tied to the RMMSC, im sure ill find out the scoop on CCSVI with regards to doctors and patients in denver... hes a good man. i trust him...
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Postby Sharon » Wed Dec 23, 2009 6:03 pm

highhopes -

I was Dr. Dake's 3rd patient - I was tested and treated with a stent in the left jugular.
Dr. Bowling is also my neurologist and he knows about CCSVI - he has all the research and he has my reports from Stanford.
My daughter (who was not CDMS) was also tested and treated at Stanford.
I have a friend who lives in Colorado Springs - she was tested and treated at Stanford.
So, three of us from Colorado with stents in our necks.
I will try to answer any questions you might have about CCSVI care here in the Denver area.

Sharon
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Postby highhopes » Wed Dec 23, 2009 6:24 pm

thanks for the input, sharon! that answers a TON of questions that i had before my visit! now, ill have to figure out where to get the procedure done after testing!

ill be sure to make you my go to person, since you know the drill...
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Postby Sharon » Wed Dec 23, 2009 8:58 pm

Highhopes

Not to disappoint you, but, currently I do not believe there is anyone trained in the Denver area to do the testing. The testing is very important. Hopefully, I will have a better answer for you in the next few weeks.

Sharon
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Postby kathryn6112 » Wed Dec 23, 2009 9:07 pm

Sharon,

I hope you hear about someone doing the testing in CO and keep this thread going. Although I live way down in Alabama, I have family in Denver and could get there easily for testing (and treatment, if available). There just doesn't seem to be much of anything going on here in the South.
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Postby bestadmom » Wed Dec 23, 2009 9:37 pm

The NE outreach group sent emails to 100 interventional radiolgists at university hospitals in 4 states. Many were published. We heard back from 10 of them and we piqued their curiousity. We know of trials being formulated in the northeast.

The way to jumpstart this in Colorado is to do the same thing and know that the odds of reaching some researchers who are turned on by CCSVI and are sparked to start investigating, are in your favor.
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Postby Sharon » Thu Dec 24, 2009 6:58 am

Exactly Bestadmom - I am now in the process of doing a follow-up to the emails.

Sharon
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Postby bestadmom » Thu Dec 24, 2009 7:07 am

This might sound very cut and dry but I am in sales, and it's all a numbers game. If you throw out enough balls, something will be caught!
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CO CCVSI help!

Postby reece » Sat Jan 09, 2010 8:42 am

Hello all,

I am in the process of moving back to CO and am wondering if anyone has found any Colorado neuro's interested in exploring the CCVSI procedure as a trial study?

I am familiar with and have read Dr. Bowlings name in various posts and was wondering if he would be the best place to start as far as a contact is concerned.

Please share with me any information you might have as I am very encouraged and excited about this procedure.

Thanks to everyone reading and responding.
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Postby Sharon » Sat Jan 09, 2010 9:22 am

I had a telephone conversation a couple of days ago with the folks at the University Hospital-Anchutz Center where the MS center is -- they do not have any plans for a study on CCSVI at this time.

Dr. Bowling is my neurologist -- he has a private practice now and is not associated with the Rocky Mtn MS Center anymore - he used to be the medical director. He is aware of CCSVI. He has the research and of course he has all of my medical reports from my procedure at Stanford. Because he is in private practice, I doubt he would be involved in any research.

At this time, I do not know of any studies planned in the Denver area. I think that I have contacted most everyone.

Right now I am trying to find interventional radiologists who would be interested in the testing. I came up against one roadblock - the IR's will not do the testing without a script from a doctor.

Sharon
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Postby reece » Sat Jan 09, 2010 9:29 am

Sharaon - thanks for the update. I am keeping my fingers crossed that someone will be inclined to explore CCVSI further and would need a guinea pig to test it on !
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Postby highhopes » Sun Jan 10, 2010 9:51 am

ive explored through the avenues available to me and received nothing from the docs in colorado, but i am flying to ohio for an mrv and ultrasound for confirmation of stenosis. if anything positive pops up that can be made available to others, i will be sure to let you all know...

btw, sharon has a TON of info on CCSVI and has been a great help to the cause! THANKS SHARON!!!
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