Cece's turn

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

Postby Johnson » Sun Jul 10, 2011 11:27 am

All the best to you manana, Cece.
My name is not really Johnson. MSed up since 1993
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Postby zinamaria » Sun Jul 10, 2011 11:36 am

We're thinking of your Cece, you go girl!
Continued healing.
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Postby Trish317 » Sun Jul 10, 2011 12:49 pm

Sending love and prayers....
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Postby pklittle » Sun Jul 10, 2011 2:59 pm

Best of luck CeCe. I hope you are not looking for total elimination of all symptoms(?) You are in very good hands though!
Wishing you all the best. C ya Friday!
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Postby Cece » Sun Jul 10, 2011 6:22 pm

Thank you :) :)
We are here now in Brooklyn. Long day of travel. I have been in a car, on the Minneapolis light rail, on a plane, on the next plane, on the NJ transit train, on a subway, and on the next subway. Way too many modes of transportation, but it got us here.

Procedure tomorrow morning. Total elimination of all symptoms? It would be great and it is in the blue-sky dreams but I am not expecting much from this second look. Really I want the confidence of knowing everything was thoroughly checked and any CCSVI that can be treated, has been treated.

Last time we stayed by the Brooklyn Bridge, this time we are staying in Park Slope itself. It's a very different experience. Both are good but here there is more to do directly out from the hotel itself. Fifth Avenue in Brooklyn has enough restaurants to keep us busy for the next six months. Prospect Park is not too far, we might visit Brooklyn Botanical Gardens there. We have tickets to be in the studio audience for both the Daily Show with Jon Stewart and the Colbert Report, on separate nights. I need to check to see if anyone from Harry Potter will be a guest one of the nights, because really they ought to be, with the movie coming out. All these plans are of course contingent on me feeling well enough. Last time, I didn't feel up to much the first two days post-procedure, but then again, last time I had to severe stenoses treated in my jugulars, and this time, maybe nothing will need treating.

The highlight of the week of course will be the symposium patient's day on Friday. I am looking forward to meeting everyone. As I said to a friend in a pm earlier, this feels like the 2nd Annual CCSVI Symposium and the 1st Annual TIMS party.
Last edited by Cece on Tue Jul 12, 2011 11:00 am, edited 1 time in total.
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Postby Drury » Sun Jul 10, 2011 8:59 pm


First time on the site in ages and wow you are having a second procedure!!!!

Great Expectations!

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Postby Thekla » Mon Jul 11, 2011 3:18 am

Have a super week! I am very curious about the azygous---can't wait to hear your report. Last year mine was judged to be ok---w/o ivus. I have wondered since. Enjoy your time ;-)
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Postby Cece » Mon Jul 11, 2011 2:58 pm

Quickly posting an update! Prior to my procedure, in consultation with Dr. Sclafani, he said that he knew I was expecting maybe something missed in the azygous but he was expecting to see narrowing in the jugulars. Guess who was right?



Dr. Sclafani was right.

My azygous is fine. My renal vein is fine, although it is a variant of normal. My right jugular is fine; it was previously blocked 80%, so this is very good. My dural sinuses, left and right, are fine.

My left jugular was not fine. It had residual tissue from the valve that had originally blocked 99% of the vein. This time it was blocked to about 60%, causing stasis and reflux. It responded well to the venoplasty.

I am back at the hotel, resting, feeling fortunate and thankful.
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Postby Kathryn333 » Mon Jul 11, 2011 3:10 pm

Cece, I've been thinking about you all day. Congratulations to you and Dr. Sclafani for a successful procedure. Get lots of rest and drink your water. You have a busy week ahead of you. :)
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Postby NZer1 » Mon Jul 11, 2011 3:31 pm

Take care Cece and thanks Dr. S for looking after her.
Good news that we have learned what happens with the residual tissue. This no doubt has been a question unanswered for Dr. S as well.
What will be the best way of dealing with this long term?
Rest and enjoy Cece,
Regards Nigel
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Postby cheerleader » Mon Jul 11, 2011 3:41 pm

great news, Cece! Have a wonderful time in NYC.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby nellie » Mon Jul 11, 2011 4:51 pm

Thanks for the update, Cece. Enjoy your week.
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Postby CD » Mon Jul 11, 2011 5:42 pm

What wonderful news. Yippee! You are good to go. :D

I'm happy it went well for both of you. I hope you can get to see some sights and make it a medical treatment, medical symposium, and vacation all in one. Are you staying past next Monday?

Dr Sclafani is usually right, you should know never to bet against him Cece. :lol:

Are you on the regular after-care injections and medications? Just curious. What keeps this from happening again, regular annual tweaks?

Answer if and when you feel up to it. Congratulations, you can now rest assured, now that you know all has been checked out.
Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010
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Postby bestadmom » Mon Jul 11, 2011 6:03 pm

Gotta trust the doc. He knows his stuff an he knows us....all too well.

Rest up, enjoy Brooklyn, Jon Stewart (love love love him) and Stephen Colbert. See you Friday.

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Postby Drury » Mon Jul 11, 2011 7:24 pm

Great news Cece!! Been thinking about you all day.

Speedy recovery.

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