Cece's turn

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

Postby MaggieMae » Fri Feb 04, 2011 12:48 pm

Wishing you the best. :D
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Postby Cece » Fri Feb 04, 2011 3:03 pm

Thank you MaggieMae (and everyone I've missed! I am going to have to print off this thread and save it, it is wonderful.)

Now that it's officially happening, I am so excited!!!!
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Postby NZer1 » Fri Feb 04, 2011 6:17 pm

Counting with you, so looking forward to hearing the results.
Guess Dr. S is also aware of the pressure he is under from all of us watching on the side!
All the best, Nigel
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Postby pklittle » Fri Feb 04, 2011 8:09 pm

Best wishes to you Cece!!!
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Postby vivavie » Sat Feb 05, 2011 10:54 am

The hardest thing with this dam disease for me is that my son has never know me healthy. 15 min before the school bus arrives I get up, get dress, put some eyeliner and a smile. I feel guilty that he did not get the childhood he could have had... Mondays are the hardness because during the weekend it is more difficult to hide...

All this to say that I know have young kids and your love for them transpires on this site. For YOU and for THEM I wish from the bottom of my heart that the procedure is a success :D
(OK, also for your husband :wink: )
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Postby Cece » Sat Feb 05, 2011 1:25 pm

NZer1 wrote:Guess Dr. S is also aware of the pressure he is under from all of us watching on the side!

He has been scarce lately! The questions are piling up.... :)

Pklittle, thank you, what a journey we've all been on.

vivavie, my kids are young and they miss out on some things or else I overdo badly so they don't miss out on things. I can relate! It would be nice if that were different. I like when people say they feel like they did five years ago, I was a more able parent five years ago.
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Postby drsclafani » Sun Feb 06, 2011 10:56 am

NZer1 wrote:Counting with you, so looking forward to hearing the results.
Guess Dr. S is also aware of the pressure he is under from all of us watching on the side!
All the best, Nigel


actually cece will be under the pressure (of about 14 atmospheres in that balloon. take that you stenosis!
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Postby drsclafani » Sun Feb 06, 2011 11:11 am

Cece wrote:
NZer1 wrote:Guess Dr. S is also aware of the pressure he is under from all of us watching on the side!

He has been scarce lately! The questions are piling up.... :)


i thought i had caught up.

and yes, being in the spotlight cast by cece the luminary could be pretty intimidating.

Something goes wrong and i will have to duck lower than frankie the fish in a brooklyn pizzeria. or sweat more than Ralphie the rat when walking near a cement factory
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Postby drsclafani » Sun Feb 06, 2011 11:13 am

Cece wrote:
NZer1 wrote:Guess Dr. S is also aware of the pressure he is under from all of us watching on the side!

He has been scarce lately! The questions are piling up.... :)


i thought i had caught up.

and yes, being in the spotlight cast by cece the luminary could be pretty intimidating.

Something goes wrong and i will have to duck lower than frankie the fish in a brooklyn pizzeria. or sweat more than Ralphie the rat when walking near a cement factory
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Postby Cece » Sun Feb 06, 2011 3:06 pm

I want to be clever in response but I've got nothing. Can't wait to be under pressure!! I am flattered but of the two of us, I am pretty sure you are the luminary. It is all about the lumen anyway, that is where the spotlight needs to be.
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Postby Cece » Mon Feb 07, 2011 12:43 pm

Countdown: 5 days away….

I am still feeling everything I've been feeling since my "16 days to go" post, only more so, since I'm down to five days. Five! You can count it on one hand.

Really excited. A little nervous. Hopeful.

I've begun packing. My husband is bringing up CCSVI on a daily basis (usually that'd be me bringing it up.) We've got our airline tickets. We've got our hotel. I've got my serum creatinine results, my kidneys are in great shape (to handle the dye from the procedure), no stumbles there. The Arixtra is on-hand.

Will my stenoses cooperate and go away (come again another day)? Will I feel better? It would be lovely if it were so, but it seems safest emotionally to go into this with as reduced expectations as I can manage. I will know soon enough.
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Postby NZer1 » Mon Feb 07, 2011 2:27 pm

I think you timing is good Cece. The Dr is putting in the hours to be mentally ready.
I was impressed to hear that, if I understand correctly, he is going to be using short length balloons so they do less damage when he is popping valve annulus rings. Very good thinking, why over stretch a vein in places where it doesn't need it, and/or from the point of lessening the risk of unnecessary tearing and repairing that could lead to thrombosis. :D
Clever thinking! :D
Identify where the vein needs attention by low pressure stretching to find the problem area and use the minimally invasive techniques of a shorter length balloon with higher pressure on the target! Brilliant! :D
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Postby Cece » Tue Feb 08, 2011 7:52 pm

He's also talked lately about where he puts the shoulder of the balloon, because the shoulder will minimize stretching of the normal vein. Who even knew balloons had shoulders.
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Postby Cece » Tue Feb 08, 2011 7:54 pm

Countdown: 4 days away....

You can count that on the four toes of an enormous broken LOST statue. Or on a hand with the thumb held down. Or on a calendar, like normal people do.

I can't wait.

I had a phone call tonight from Holly. Everything is in order. She won't be at the Brooklyn office, unfortunately, when I am there, so I will miss out on meeting her after all this time.

I am not yet packed. I want to put the Arixtra in my carry-on, is that an issue with airport security? I am supposed to have comfortable clothes for after the procedure, will jeans do or must I bring my sweats to Brooklyn? I miss my kids already and we're all still here.
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Postby hopeful2 » Tue Feb 08, 2011 8:09 pm

Cece: Four to go. Wow.

About the jeans, it depends on how tight they are. My experience was that I just wanted to be comfortable afterwards and not have anything tight by the groin area of the incision. Just let yourself wear loose fitting stuff for the procedure day and forget the fashionista thoughts. You're beautiful just the way you are :)

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