Quick Update From Mel & Jamie @ follow up!

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

Quick Update From Mel & Jamie @ follow up!

Postby Jamie » Thu Sep 24, 2009 10:53 pm

All is great, scans look good for flow in both jugs, off the meds and see Dr. Dake in a year. Didn't have the MRI ready, but Mel's MRI has been stable since hicy anyway, and with all due respect we'd only be bothered about that if she hadn't shown a 100% turnaround. If we were searching for 'evidence' you know? But we're not. The evidence is there everytime I look at her.

Lots more to share about the experience etc, and some tidbits about upcoming trials hot off the press.

However, for the next few days Mel and I are going to party like its 1999 and show Napa some old school English shenanigans, forget about MS for a few days at least.

Love to everyone.

J.
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Postby Ernst » Thu Sep 24, 2009 11:08 pm

Hello Jamie and Mel,

So happy to hear that things are so good. I think she is big evidence, what succesful operation can do - or effect. Now I don't remember her exact symptoms before op - but was it fatigue the worst? Or moving, walking etc.?
And now when jugulars are working right, the symptoms have disappeared quite effectively or all gone?
I have been writing some "cases" from here to finnish forum and I'm always interested when someone is updating how they are doing. This is so so so so interesting and wonderful.

- Ernst
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Jamie » Thu Sep 24, 2009 11:33 pm

Ernst,

Mel's number one issue was fatigue, heat sensitivity, brain fog and left sided weakness, left sided double vision.

Fatigue, brain fog and heat sensistivity went within a week and haven't returned.

Physical weakness and double vision took about a month but have also gone.

She was only 2 years into RRMS but it was aggressive, especially pre-hicy.
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Re: Quick Update From Mel & Jamie @ follow up!

Postby Loobie » Fri Sep 25, 2009 6:06 am

Jamie wrote:However, for the next few days Mel and I are going to party like its 1999 and show Napa some old school English shenanigans, forget about MS for a few days at least.

Love to everyone.

J.


Give 'em hell dudes!
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Postby catfreak » Fri Sep 25, 2009 7:37 am

Great update Jamie!

Very happy for Mel. Give us all so much hope for the future!

How far is Napa Valley from Stanford? We want to go there too. Very interesting for us since the hubby makes wine as a hobby.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby cheerleader » Fri Sep 25, 2009 7:41 am

Oh, yeah...go Jamie and Mel!!! Off the bloodthinners, on to WINE!
No need to post, we know you'll be, uh, busy...

Can't wait to hear all the news, but forget about us.
You both deserve it!
cheer

Cat...you'll need a car to get up to Napa Valley, it's north on the 101, thru San Fran and across the gorgeous Golden Gate Bridge. Maybe 90 minutes away from Palo Alto (depending on traffic...but worth it.) Jeff and I played a gig together at the Mondavi's house one Christmas...left with some incredible bottles. Beautiful countryside.
Last edited by cheerleader on Fri Sep 25, 2009 7:45 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Fri Sep 25, 2009 7:42 am

Cool!! Enjoy!! xx
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Postby mrhodes40 » Fri Sep 25, 2009 8:19 am

I'll have many happy thoughts going your way thinking of your little honeymoon and how sweet it is with such an incredible turn of events. :D :D :D :D

We will all be interested in your tidbits though when you are ready.

And thank you for staying connected and continuing to share :wink:
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 CRHInv » Fri Sep 25, 2009 9:06 am

Have a wonderful vacation! It is so encouraging to hear from you and I really appreciate you guys taking the time to keep up posted.
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