My Turn!

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

My Turn!

Postby magoo » Tue Oct 13, 2009 3:01 pm

I leave first thing Thursday morning. Testing scheduled for Friday 10/16. Consult and procedure scheduled for Monday 10/19. I do have to admit a case of nerves has hit me. I think it has more to do with leaving my family and traveling alone, than with the treatment. I wanted to post now because I'll be tying up a million loose ends tomorrow. I'll post my journey. Wish me luck!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby sewwhat » Tue Oct 13, 2009 3:32 pm

Best of wishes being sent out to you ~~
You'll be in my thoughts & prayers. Can't wait to hear your update :) tc
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Postby mrhodes40 » Tue Oct 13, 2009 3:39 pm

WOW! good luck to you :D :D
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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Go Magoo!

Postby Rose2 » Tue Oct 13, 2009 3:59 pm

You Go Girl! I am right behind you, Mon/Tues 19/20.
I am more nervous that there won't be anything found on the MRV/MRIs.
wierd, huh?
Best to you. I know your support team will keep it all together while you are gone, so try to relax!
Rose
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Postby magoo » Tue Oct 13, 2009 4:12 pm

Rose,
Believe me, I am worried about that too! How strange it is to think, there better be something wrong! I hope we get a chance to meet :) Best of luck to you too!!!! Thanks :):):)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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((hUGS))

Postby Rose2 » Tue Oct 13, 2009 4:20 pm

Back at you, Magoo with ((Hugs)).
Rose
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Postby jay123 » Tue Oct 13, 2009 4:34 pm

I don't want to worry anyone at all but is this something you should go to by yourself?
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Jay123

Postby Rose2 » Tue Oct 13, 2009 4:42 pm

Jay,
Having been a patient at Stanford and my husband also for more than I want to list, you are never alone! Ever!
They are the best and make you feel like royalty (which does end when you come home), but trust that you will receive good care.
I do know what you mean, because we have all had to sit with loved ones in some facilities to make sure they get their ice chips, etc. but I have never found that to be the case at Stanford.
They will make sure you are cared for.
ALL of our experiences anyway. Rose
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Postby bestadmom » Tue Oct 13, 2009 4:55 pm

Good luck to both of you. I hope you have the big S and then get those stents put in!
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Postby cheerleader » Tue Oct 13, 2009 4:57 pm

Good luck to both of you, Rose and Rhonda...
what a quick turnaround!
Jeff flew up for his stent procedure and 2 month ballooning by himself. He's also only a 1 on EDSS scale and gets around fine, and he felt better going in on his own than having me sitting in the waiting room, worried :) I stayed home with our son.
Everyone is different- but for him, he felt attended to at Stanford and it was empowering for him to do something so proactive for MS-
Five months later, he's still glad he did!
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby magoo » Tue Oct 13, 2009 5:09 pm

Don't worry, my Mom is going to be with me!!!! She still lives in CA, which is where I am from. And I have friends who will visit and take care of me. My Mom has taken tons of time off and I will stay with her until the following Saturday. Then I will fly back home.
I AM glad to hear about the people at Stanford being so wonderful. I have such anxiety around doctors. Lots of bad experiences with stupid ones! LOL!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby jay123 » Tue Oct 13, 2009 5:48 pm

Good, I'm glad you have people there.
My thoughts on having someone with you weren't for the time at the hospital, but more the time of traveling from the hospital, to hotel, airport, etc. after the operation. I have been planning all along that my wife will come with me to assist. Being on a limited budget I would rather have her go with me for the followup appt and maybe spend a couple of extra days.
BUT, knowing her she won't let me go alone for either appointment! She doesn't even trust me going to my regular appts alone, she thinks for some reason I have selective memory of what the doc says...imagine that.
She really wants to go to my next appt where we discuss my Stanford plans which I don't think my doc will be enthusiastic about.... plus my stopping tysabri because it doesn't seem to be slowing me down...
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Postby Arcee » Tue Oct 13, 2009 6:04 pm

Best of luck! It is very exciting. (And I found the folks at Stanford to be really helpful.)
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby CRHInv » Tue Oct 13, 2009 6:52 pm

Oh my gosh! This has come up so fast! Please know that I will be thinking about you and sending all my best thoughts. I have such high hopes. I guess I might need to borrow your lists of things to get ready before leaving... I am scheduled for Nov 9th and 10th!
Take care my friend!
Beth
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THANK YOU

Postby Rose2 » Tue Oct 13, 2009 7:29 pm

Thank you all for your support, prayers and thoughts as we all go thru this together.!
Rose
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