Randi's Turn

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

Randi's Turn

Postby Arcee » Sun Jul 12, 2009 5:47 am

Ok, so it's my turn to pack up and head out for a CCSVI Stanford adventure. Thanks to all who have blazed the trail and shared their experiences. I will post in this thread when I can, and also pass on information to Joan so she can, and to Lew (when I actually see him!).
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Postby Sharon » Sun Jul 12, 2009 6:16 am

"Your turn at the wheel" Randi! Best of luck to you - looking forward to your updates. Travel safely. And, maybe you need to smile when in the tube if you plan on posting your MRI's on TIMS :lol: :lol:
Take care and know that you will be in my thoughts and prayers.

Sharon
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Postby peekaboo » Sun Jul 12, 2009 6:27 am

Randi - have a successful trip, hope you and lew will meet up...misery loves company :D :D Will anxiously wait for you posts.
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Postby Needled » Sun Jul 12, 2009 6:38 am

Randi, From one New Englander to another, best of luck. I'll be wearing out what's left of my "refresh" button for your updates. Jeez, never mind venous issues, I'm going to have heart issues with all the activity buzzing around this board!!
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Postby javaneen » Sun Jul 12, 2009 6:42 am

Good Luck Randi! Safe Travels. You have an adventure ahead of you. We will all be patiently (well as patient as possible) waiting to hear your results and what Dr. D's recommends.

Stay positive!
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Postby skydog » Sun Jul 12, 2009 10:20 am

Happy Trails to You, Its all good and you will do great in the care of the best of the best who are all at Stanford. Peace, Mark
Plant a BIG Garden Live in the Moment
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Postby bestadmom » Sun Jul 12, 2009 3:29 pm

Best wishes for a successful trip from the CCSVI section's other New Englander.
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Postby IHateMS » Sun Jul 12, 2009 3:48 pm

Best of luck to you
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Postby coach » Mon Jul 13, 2009 1:21 pm

Wishing, hoping, and praying the best for you.
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Postby mrhodes40 » Mon Jul 13, 2009 7:08 pm

Randi this is a good journey and you will learn something new about this interesting body that you have to take care of. No matter what you learn or decide it is information you can use!
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 Needled » Tue Jul 14, 2009 9:20 am

Hey Randi, It's mid-morning out there in Cali, so I'm guessing your testing is underway. Just wanted to drop a note to let you know I'm thinking of you!
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Postby catfreak » Tue Jul 14, 2009 10:06 am

Randi,

We are all thinking of you and waiting to hear your test results.

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 » Tue Jul 14, 2009 4:01 pm

Hey Guys...
Just walked in the door from my Florida trip. Here's the latest from Randi-

MESSAGE FROM RANDI:
Hi Everyone,
Odd to say this is good news, but my left jugular vein 'may as well be functionally occluded' so I will have surgery tomorrow to implant a stent and get the blood flow normal. No promises as to what this will do, but the hope is to prevent or miniMize progression. May have immediate effects, like improving my sense of direction (just kidding). But it may improve my ability to deal with heat, for example.

I am excited and comfortable. I spent some time today with Lew's mom, which was nice for both of us. He gave me an advance run down on things as he was a day ahead of me and it really helped. My neuro and the doctor here spoke and I think we are all comfortable with what is happening. As many had told me,


So surgery has been moved to 8 AM PST toMorrow morning. I will then stay overnight at the Stanford hospital and then back to the Sheraton where I will lounge poolside until I leave on Sat.
Time for me to get moving, but I will try to write or call when I can.
Thanks so much for all your support and caring. It really helps with every step of this surprising journey.
Love,
Randi

Sent from my iPhone

ALSO....


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

Sent from my iPhone
Last edited by cheerleader on Tue Jul 14, 2009 4:59 pm, 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 cheerleader » Tue Jul 14, 2009 4:45 pm

MORE FROM RANDI...via that terrific i-phone :)
She'll be able to post for herself on Thursday....

And here is some technical stuff: tight narrowing at C2 that extends 3cm. It is very typical from what he has seen so far. Nothing else appears problematic but he (Dr. Dake) will poke around. And I think one bi factor in my decision making, in case it helps others, was that I have had a terrible time with the (MS) meds. I have been allergic to or have had problems with all that I have tried. Although I am doing fine now, I think it only is a matter of time so for me the surgery makes a lot of sense, especially safety wise.

Sent from my iPhone
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Tue Jul 14, 2009 5:01 pm

Good to hear from you Randi -

You will be in good care there at Stanford and once you have the intervention whoo hooo

i can't believe you texted ? all those words...what a chore..thank you for communicating w/us via Cheer :)
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