MRV Today!

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

MRV Today!

Postby Johnnymac » Tue Feb 23, 2010 10:25 am

Well, I finally got the call today that Courtney's approval went through to get the MRV done, and it just so happened the imaging center had a cancelation today at 1:30 so we're off to get tested! (the next opening isn't until April)

A little nervous as I think we may be the first to have the MRV done here in town specifically looking for CCSVI. We've been assured the doc knows the protocols to use but I'm still worried about a false negative....

Started banging on the doors of IRs about 4 months ago and finally have some movement. Please keep us in your thoughts, I hope they find something!
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Postby lucky125 » Tue Feb 23, 2010 10:27 am

How awesome! Fingers, toes, and legs crossed for you. Please let us know how it goes!
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Postby ozarkcanoer » Tue Feb 23, 2010 12:23 pm

Good luck JohnnyMac and wife !!!!!

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Postby Johnnymac » Tue Feb 23, 2010 1:21 pm

Got the IV in and were just sitting in the waiting room. In the words of the great Tom Petty, "The waiting is the hardest part"
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Postby AlmostClever » Tue Feb 23, 2010 1:41 pm

Good Luck!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby youbetcha » Tue Feb 23, 2010 2:32 pm

Good luck and all the best.....keep us posted.
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Postby Johnnymac » Tue Feb 23, 2010 2:33 pm

They are having probs with the machine.... Still waiting, the protocol were told takes close to two hours so we're gonna be here for a while still... At least my iPhone works here in the basement
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MRV

Postby Opera » Tue Feb 23, 2010 3:17 pm

I am praying for you to get a conclusive result.
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Postby berriesarenice » Tue Feb 23, 2010 5:51 pm

Anxiously waiting...

Best of luck!
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Postby magoo » Tue Feb 23, 2010 6:28 pm

Thinking of you and hoping they know the protocol and you have no problems! I know you are so anxious and excited!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Johnnymac » Tue Feb 23, 2010 7:32 pm

Well other than a 3 hour delay in getting the scans started everything went pretty smooth. The Radiologist at the imaging center will read the scans and send them along with a report to our IR hopefully tomorrow. Will let you all know as soon as we hear anything.

The scans took about 2 hours (a tad over), and I have it on pretty good authority it was the same protocol used by Dr Dake at Stanford. I thought it was interesting the technicians didn't know they were testing for CCSVI, they just had a protocol given to them and they followed it. I guess the MRV isn't as operator sensitive as ultrasound so I'm not too worried about it, they did seem to know what they were doing.

I may not sleep until I hear from the Dr lol
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Postby TFau » Tue Feb 23, 2010 7:35 pm

Reading this thread was like following a suspenseful movie!

I hope they find stenosis for your beautiful wife!

Theresa
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Postby Cece » Tue Feb 23, 2010 7:41 pm

Well done Johnnymac, here's hoping for a stenosis to show up loud and clear!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby costumenastional » Wed Feb 24, 2010 5:41 am

I hope we hear the best of news soon. Let us know!!!
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Postby Johnnymac » Fri Feb 26, 2010 5:31 am

Things are moving along. I got a call yesterday afternoon from the IR's office to set up an appointment for Court to actually see the doc. Since our GP wrote the script for the MRV, I would think that if the results were completly negative the IR clinic would have just passed those results on to Courtney's GP to deliver the news, or would have just told us over the phone? This is the head of IR at this clinic so I would think he's not going to schedule time for a patient with 'normal' scans.....at least that's what I'm hoping! I've asked for some prelim results of the scans so hopefully I'll hear from the nurse today.

The appointment with the IR is now set for March 23rd.
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