Poll: Getting treatment?

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

Are you getting treatment for CCSVI?

Yes, I am getting treatment at Stanford.
13
24%
Yes, I am getting treatment somewhere else (post where in this thread)
10
18%
No, but I am looking for someone locally to do it
22
40%
No, I'll wait for more research or my neuro to say do it.
10
18%
 
Total votes : 55

Postby patientx » Fri May 22, 2009 6:44 am

Sharon,

Thanks. I tried emailing the vascular department at a big university hospital here. I didn't even include the Zamboni papers, or indicate that I was looking for treatment. I just asked if the neuro-vascular doc would be interested in possibly reading the papers and giving an opinion. No response yet. I'll continue to try others.

whyRwhere:

I know the site you're talking about. You probably saw my posts there. I couldn't believe that thread was closed - what are we, in China, with the censorship? Anyway, that's the general attitude at many other sites: just take your injections like a good patient. The neuros know best.
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Postby whyRwehere » Fri May 22, 2009 8:17 am

Yes Patientx, I did see your posts and appreciated them. I didn't think the topic was that heated at all, but that's the excuse they used for closing the thread...I won't be going back to see them change their minds....
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Postby cheerleader » Fri May 22, 2009 8:33 am

Many of these web sites are maintained, hosted, and administrated by pharmaceutical companies. I think the one you're discussing is hosted by Bayer. TIMS is unique, in that it is an independent site...thank God.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby alta » Fri May 22, 2009 2:10 pm

If you do a search on “Bayer Pharmaceutical research on Multiple Sclerosis” you will find they have ties with Betaseron.

BAYER, the Bayer cross, and BETASERON are registered trademarks of Bayer
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Postby Jamie » Tue Jun 02, 2009 12:20 pm

Artifishual wrote:heather not sure where you are located in texas, but i am waiting to hear back from a dr in the baylor medical group in houston, if i don't hear from him within a day or two i am planning on scheduling an appointment. my neuro is also in the texas medical center and when i brought this to him
he was sorta layed back about it, but now he wants me to get tested to see.


Hey there!

Who is your neuro in TMC?

We live in Houston and are looking at Stanford for this but locally would be a lot better!
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Postby CureOrBust » Wed Jun 03, 2009 6:38 am

I received a letter from my neuro, he has booked me in for an MRV on the 10th (next week).
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Postby mrhodes40 » Wed Jun 03, 2009 8:02 am

Hey great news CUre!! Can't wait to hear what the results are on this.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Jamie » Thu Jul 09, 2009 12:36 pm

interested to see this vote a month on!

wow, this has all happened so quickly!
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Postby MaggieMae » Wed Jul 29, 2009 11:15 am

Hub wrote:My wife is heading to Stanford in June for the MRV/MRI/ultrasound trifecta. It's crazy that I'm hoping Dr. Dake finds a venous problem, but if fixing it can help her MS, as increasingly seems to the be the case, I'll toast Zamboni, Dake, Cheerleader, Marie, Dignan, and everyone else who has provided insights on the connections between CCSVI and MS....

Thank you all for the hope you have provided. I'll post updates when I have them....


Hub, Did your wife go to Stanford in June as indicated? Haven't seen any posts since this one.
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Postby Cece » Wed Jan 20, 2010 11:38 am

zap wrote:I'm going to start digging around here in the Minneapolis area - you'd have to think that someone at the Mayo Clinic would be interested, maybe we can get a mid-country node going there ...

http://www.mayoclinic.org/vascularcente ... eases.html


What sort of response did you get from Mayo? I'm here in MN too. I saw the reponse later in this thread from MN Radiology (sp?), not so promising. I am gathering my strength to seek imaging & treatment. I have been thinking HCMC radiology or Fairview UMMC might be possibilities.
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Postby AlmostClever » Wed Jan 20, 2010 6:01 pm

Texans:

And don't forget - I believe JohnnyMac was checking in at UTSouthwest to see if they had enough experience to do the testing.

Maybe us Houstonians can carpool? How cheap would that be, huh?



(ok, this forum is almost becoming a guilty pleasure...)
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby esta » Fri Jan 22, 2010 10:57 am

I'm off to Poland June 2010
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Postby babiezuique » Fri Jan 22, 2010 11:08 am

I had a doppler done at the Westmount Square Montreal
My gp gave me a paper to meet a radiologist interventionist in montreal
His secretary told me he wes busy but i could met in within three months
If you do your home work you can reach your goal!

Barbara
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Postby AllyCanada » Sat Jan 23, 2010 7:26 am

I am seeking treatment outside of Canada. I am on the list for April 2010. :D
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Poland

Postby fiddler » Sat Jan 23, 2010 7:55 am

I will be going to Poland for assessment and (presumably) treatment in late April/early May. If I can find a place in eastern Canada that I trust to do it right, I may be assessed here before that, but primarily to ensure that any occlusions I have are not caused by bones pinching my jugulars (I have osteoarthritis). If I do have jugulars pinched by bone, Dr. Simka may not be able to help me. If anybody else on TiMS knows about such cases and what can be done, please let me know.
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