Randi's Turn
- Arcee
- Family Elder
- Posts: 338
- Joined: Wed Jan 05, 2005 3:00 pm
- Location: Massachusetts, USA
- Contact:
Randi's Turn
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!).
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
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
- cheerleader
- Family Elder
- Posts: 5361
- Joined: Mon Sep 10, 2007 2:00 pm
- Location: southern California
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
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
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
- cheerleader
- Family Elder
- Posts: 5361
- Joined: Mon Sep 10, 2007 2:00 pm
- Location: southern California
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
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
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com