My test results and visit with Dr. Dake

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

Postby Johnson » Fri Dec 11, 2009 4:26 pm

I am so glad to amuse. I can laugh, when things ain't funny...

Mark - I swear that he said that!
My name is not really Johnson. MSed up since 1993
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Postby jay123 » Fri Dec 11, 2009 5:33 pm

I'm happy I'm a code blue at least!
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Postby CRHInv » Fri Dec 11, 2009 6:20 pm

CureIous wrote:I mean obviously a big part of that was improved blood flow, toss in the IV steroids and a banana bag as they call them, and even with a miserable sleep I felt GREAT in the morning.


Did Dr. Dake give you IV steriods after the procedure? I didn't know about this, or am I just reading this wrong?

TIA
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby bibliotekaren » Fri Dec 11, 2009 8:00 pm

Hey Prof8 - a mixed congrats on the pancake vein find!

prof8 wrote:... because it's not a trial for MS per se. It's a vascular trial to see what happens if you fix stenosis using stents in the veins.

This is the first that I heard this -- I have hope again! Alex told me I'm at the top of the chart pile but when I heard clinical trial I figured I'd be disqualified -- am atypical non-clinically definite and have had past brain trauma.

About the different specialities of docs...in the last two years I've seen a stunning amount of docs. The Rheumatologist and now, my primary Internist, are more willing to look outside the box than the Neurologists. A very funny bunch they are, especially the MS specialists. It's as if the unknown/unpredictable nature of MS has instilled a deep sense of futility in them. So, they are wary of deviating from a path defined by outside standards.

Johnson, that was an incredible vignette. OMG, if those Gaza Strips folks can keep it together what's your problem? Wow.

Again, congrats Prof and thanks for sharing this info about the study.

Donna
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Postby wishwinewasrx » Fri Dec 11, 2009 8:28 pm

I'm a newbie on this site - but dx in 98....and live 15 minutes away from Stanford. Asked my (stanford) neuro for a referral to dr. dake and have had no response. - does any one know if dr. dake is accepting new patients? must i have a referral?

I have only begun to start the process of making *this* happen and am aleady extremly fusterated. Can only imagine what the rest of you (who haven't had the procedure) are feeling....

katrina
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Postby EnjoyingTheRide » Sat Dec 12, 2009 5:12 am

wishwinewasrx wrote:- does any one know if dr. dake is accepting new patients? must i have a referral?


Dr. Dake is not accepting new patients at this time for CCSVI. He is setting up a study that will commence early in 2010. At that time he'll start taking new patients again.
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Postby jay123 » Sat Dec 12, 2009 6:58 am

and good luck getting a Stanford neuro to support you (sic), I'd be prepared to look for a new MS doctor if you get involved!
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