At Stanford

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

Postby LR1234 » Mon May 18, 2009 10:59 am

Hope all is going well Marie, I/We look forward to hearing from you!!
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Postby Needled » Mon May 18, 2009 12:22 pm

Marie, Just checking in to add my thoughts and best wishes to everyone else's. Jeez, I'm nervous, just hanging around waiting for the good word.
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Postby Loobie » Mon May 18, 2009 4:02 pm

Marie,

Angela is supposed to tell you hi from me and give you a kiss. If she doesn't me and her are going to have to throw down! :lol: I was finalizing my appointment times with her and I said "my friend Marie must be in there by now". She was like "I love her!", so you've already won them over :D. Get them all buttered up for when I get out there! July 13th is locked and loaded!
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Postby Terry » Mon May 18, 2009 5:52 pm

This thread should be renamed "The waiting room". lol
Pacing and hopeful,
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Postby cheerleader » Mon May 18, 2009 6:14 pm

I got an e-mail at 1pm pacific time from Marie....the MRI/MRV tests went fine, she did well, no news on her results from the techs. Marie went back to her room to rest before her appointment with Dr. Dake, was e-mailing me when Angela called and asked if she could come back right then. Not sure what this meant...if more testing was warranted, or if Dr. Dake wanted to see her sooner... it's now 5 hours later. tick tock...

Thinking of you, Marie-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Mon May 18, 2009 6:41 pm

Hey, it's me ..... my computer is on the fritz so if you don't hear from me that is why.

I am scheduled for surgery tomorrow at 6am.

Stunningly, I have the same problem Jeff did, severe bilateral jugular stenosis, and I will have bilat stents- or maybe one stent we'll see how it is. Dr Dake thought he'd get to see something else in me but not so. The vertebrals were acting the way they were because they were overloaded taking the jugular load. I too have a lot of collateral circulation so that shows the venous drainage seeking a new route to get back to the heart.

I have to get up in 11 hours and go in so I will possibly write back if I can get my computer going--the battery is suddenly on the fritz...

wanted to let you guys in on it cause i know how it feels out there to be waitning
marie

wouldn'cha know it......... :oops:
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 Artifishual » Mon May 18, 2009 6:47 pm

i hate to say this, but that is awesome news !!!!!! get some rest marie! God bless and you are in my prayers
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Postby cheerleader » Mon May 18, 2009 6:57 pm

Marie....wow...I am shocked! Jeff's out at a meeting, but I'll have him e-mail you some support. The good news is that Dr. Dake has done this one before :)
In the Zamboni canon, this is pattern C. More common in RR and secondary progressive. It appears that the collateral drainage patterns are very important in how disability manifests. Jeff's stenosis was very high, by the brain stem. He had severe jugular reflux into the brain. No vertebral reflux. His damage was mostly cerebral. Wondering where exactly your stenosis are...if they're further south.
Did you see it on the computer screen...wild, huh? I think Dr. Dake was expecting to see something in the azygos (I know we were!)

Hope your battery holds out so we can talk with you and offer support.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby alta » Mon May 18, 2009 7:11 pm

Glad to hear things went well and Dr Dake can correct the stenosis for you. Was he able to tell what was causing it? I’ll be thinking and praying for you tomorrow. Try to get some rest tonight.

2 out of 2

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Postby Sharon » Mon May 18, 2009 7:14 pm

Oh, Marie! How grateful we all are that the tests went well - surprise about your jugular vein - you were expecting the asygmous. Oh, well whatever! Do we really care what vein it is? Get the darn thing open and let's get mov'in!! I've been thinking that mine was the asygmous also - I guess I will not think about it any longer until June 1st.

And, FYI - I had to keep moving today - it was like I had ants in my pants waiting for the clock to tick. My solution was get to the garden - thanks to you my garden is ready for planting! It usually takes me three or four days :wink:

Sleep well tonight - 6:00 am for treatment means an early morning call.
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Postby mrhodes40 » Mon May 18, 2009 7:36 pm

Well bring me a zucchini! lol

I will sign out until after the fact.............

on wings of prayers thanks for all the encouraging support everyone.
marie
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 skydog » Mon May 18, 2009 8:20 pm

Great to hear that everything is going well for you Marie. Been a little out of touch with all the new events. Catching up on the honey dews since I spent most of last week fishing... Hope you get some good California sunshine to keep your spirits bright. Drizzle and light rain for the north again. Best Wishes Mark
Plant a BIG Garden Live in the Moment
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Okay who's next?

Postby akaheather » Mon May 18, 2009 8:27 pm

Okay, who's next? :lol:

Sharon's on the 1st of June.
Loobie is July 13 th.

Do we have anyone else in May?

I sent a fax of Dr Zamboni's report to my neuro today. I think I will send a short note regarding Marie's findings tomorrow. Maybe, if we all just keep our neuros updated, we might just be able to pique their curiousity.

Good luck tomorrow!!
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Postby peekaboo » Tue May 19, 2009 5:51 am

Good morning all -

I crashed early last night so i wasn't able to hear the news until now 5:43 PT I too am surprised at the results being dual Jugular similar to Jeff's. I too am expecting the Azygos vein.

Sharon & I will be two ships crossing in the night...she gets tested on the 1 of June and then her op on the 2nd where I will be tested on the 2nd and op on the 3rd. We do plan to meet each other no set time yet. I wish I could meet you all. You all are wonderful supportive people.

Getting sappy here too early for that :roll:
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Postby cheerleader » Tue May 19, 2009 6:48 am

Marie's battery is out, and her computer won't function without it, but she sent a quickie to say thanks for all the thoughts prayers as she heads over for her procedure.
we all thank you, Marie-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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