Randi's Turn

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

Postby whyRwehere » Tue Jul 14, 2009 6:03 pm

Randi, is that a surgeon like Dake or a neurologist doing the follow up...can you say anymore about where in Boston? And who, of course. Really dying to hear more from both you and Lew now, but also am dying to go to sleep...so guess it will be tomorrow...good luck!
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Postby bestadmom » Tue Jul 14, 2009 6:12 pm

Thank you, Cheer, for keeping us abreast of Randi's diagnosis.
Randi, congrats on your occlusion. and good luck tomorrow. I'm glad we Yankees...oops Red Sox (!) will have an option on this coast soon.

Michelle
Last edited by bestadmom on Tue Jul 14, 2009 7:07 pm, edited 1 time in total.
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Postby javaneen » Tue Jul 14, 2009 7:05 pm

Great news Randi! Thanks for updating us Cheer. good luck with the surgery. Safe healing....enjoy lounging by the pool. Keep us all updated on your progress.
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Postby Jamie » Tue Jul 14, 2009 7:52 pm

Same blockage at C2 as Mel.

She got good, quick relief.

The surgery was painful but that high up the recovery seems to be easier.

good luck!
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Postby Sharon » Wed Jul 15, 2009 6:02 am

Thanks Cheer for forwarding Randi's text messsage.

Pls tell the new englanders that I will be doing follow up in Boston, so someone there will be getting tuned in soon


This is great news - I wonder if Dake is teaming up with someone on the East coast or are we finally seeing other doctors get interested on their own?

Sharon
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Postby Needled » Wed Jul 15, 2009 6:07 am

Randi, I'm so glad he found something fixable. Will be thinking of you today and hoping your surgery goes well. Please send word when you're able. You guys just don't know how stressful everyone's tests and surgery are on ME. I'm not very good at the waiting game, but I'm a pro at the worrying game. :roll:
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Postby Sharon » Wed Jul 15, 2009 6:21 am

Needled wrote
You guys just don't know how stressful everyone's tests and surgery are on ME. I'm not very good at the waiting game, but I'm a pro at the worrying game.


Just to reassure you N - I think everyone going to Stanford is hoping for a blockage - then Dake works his magic. It does get exciting for all of us as someone starts the CCSVI adventure -- know that the best of care is given to the MS'rs. I personally think that we are the lucky ones going through this now -- Dake is being careful and meticulous.

Sharon
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Postby Needled » Wed Jul 15, 2009 7:06 am

Sharon, Thanks for the encouragement. My head knows everything you say is true. And if anyone were doing my surgery, I'd want the team at Stanford for sure, they'd absolutely be my first choice. My heart, though, that's another matter. I'm just nerved up until I know it's done and the person is OK. I've always been like that. In other circumstances, you'd think that's weird, being so concerned about people you've never met. But everyone here has found their way into my life, so I worry about them just as if they were my own family. So, I certainly don't want anyone to think I don't have confidence in Dr. Dake and his crew. That's not the case at all. It's just me being me. :oops:
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Postby Sharon » Wed Jul 15, 2009 9:57 am

I understand -just trying to "destress" you a bit. You have been a wonderful support for everyone who has gone to Stanford.
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Postby mrhodes40 » Wed Jul 15, 2009 11:29 am

I understand the worry game I HAVE THAT GENE TOO!! :oops:

This is really fun though. FINALLY. something that is adding up, you know? person after person having this anomaly. time and time again. NEVER has this been true in MS before.
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 cheerleader » Wed Jul 15, 2009 12:51 pm

JUST HEARD FROM RANDI
via that iphone:

She's in recovery and resting- all went well.
whoo hoo!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby bestadmom » Wed Jul 15, 2009 1:16 pm

That's great news. She must feel pretty good if she's texting from the recovery room!
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Postby peekaboo » Wed Jul 15, 2009 1:19 pm

Exellent :D
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Postby Sharon » Wed Jul 15, 2009 1:20 pm

Okay, so those that are scheduled to go to Stanford, start learning how to text message 8) It never occurred to me to have my cell phone in the recovery room!
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Postby catfreak » Wed Jul 15, 2009 1:40 pm

Great news! :D

Wow, Texting in the recovery room... I can barely text when I am just doing normal stuff.

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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