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Randi's Turn
Posted: Sun Jul 12, 2009 5:47 am
by Arcee
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!).
Posted: Sun Jul 12, 2009 6:16 am
by Sharon
"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
Take care and know that you will be in my thoughts and prayers.
Sharon
Posted: Sun Jul 12, 2009 6:27 am
by peekaboo
Randi - have a successful trip, hope you and lew will meet up...misery loves company
Will anxiously wait for you posts.
Posted: Sun Jul 12, 2009 6:38 am
by Needled
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!!
Posted: Sun Jul 12, 2009 6:42 am
by javaneen
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!
Posted: Sun Jul 12, 2009 10:20 am
by skydog
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
Posted: Sun Jul 12, 2009 3:29 pm
by bestadmom
Best wishes for a successful trip from the CCSVI section's other New Englander.
Posted: Sun Jul 12, 2009 3:48 pm
by IHateMS
Best of luck to you
Posted: Mon Jul 13, 2009 1:21 pm
by coach
Wishing, hoping, and praying the best for you.
Posted: Mon Jul 13, 2009 7:08 pm
by mrhodes40
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!
Posted: Tue Jul 14, 2009 9:20 am
by Needled
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!
Posted: Tue Jul 14, 2009 10:06 am
by catfreak
Randi,
We are all thinking of you and waiting to hear your test results.
Cat
Posted: Tue Jul 14, 2009 4:01 pm
by cheerleader
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
Posted: Tue Jul 14, 2009 4:45 pm
by cheerleader
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
Posted: Tue Jul 14, 2009 5:01 pm
by peekaboo
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