Cece's turn

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post by CD » Thu Feb 10, 2011 7:53 pm

Another "Norski" here! Brooklyn had plenty in my day. My husband and I were both born in Brooklyn, and so were all my kids.

Cece, I think that you will have 4 out of 5 of Dr. Zamboni's Criteria for CCSVI. They are easy to accumulate, like red Thongs. :wink:

Did you know that laughter makes the veins flow better? That is why some people get so red after a laughing fit. "Be happy, don't worry."

edit: to add a word.
Last edited by CD on Fri Feb 11, 2011 10:31 am, edited 1 time in total.

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Post by PCakes » Thu Feb 10, 2011 10:51 pm

Dear Cece,
Wishes and prayers for you my virtual friend.
The Stenosis Slayer is on his way.

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Post by Rokkit » Fri Feb 11, 2011 7:42 am

Cece, I'm pretty sure your doctor couldn't care less what the ultrasound shows. You're gettin' a venogram.

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Post by hopeful2 » Fri Feb 11, 2011 9:24 am

Hey Cece, I'm wishing you the best results tomorrow (pop, pop, and all that).


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Post by CCSVIhusband » Fri Feb 11, 2011 9:50 am

Best of luck cece ... it'll certainly be a pleasure reading your posts when you have real personal experience with the procedure.

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Post by nellie » Fri Feb 11, 2011 10:27 am

Cece, thinking of you. I'm so glad you're having this done now, avoiding progression . Praying for you for the best possible results.

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Post by esta » Fri Feb 11, 2011 11:12 am

cheez, i just read thru 9 pages CECEE, and you haven't got the procedure yet!!!!!!!!!!!!!!!!
just good wishes for you my dear, dr sclefani is the best from all i've read, sooooooo who could worry?
i'm on pins and needles for page 10...you're like our erica/slovacia in north america, i love reading anything you write...GOOD LUCK!!!!!!
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia

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Post by Cece » Fri Feb 11, 2011 11:17 am

Drury wrote:Cece,

Can you feel the love???!!!!!!!!!!!!
Can I ever. :)

Countdown: 1 day away....

This morning was one big rush, from the alarm to getting ready to breakfast and "we are done eating whether we are done or not" to the taxi ride during rush hour to the clinic, where all the rushing was rewarded with the absolute delight of meeting Dr. Sclafani.

I smiled quite a lot, I believe. It is odd, meeting someone you already know. He is soft-spoken, intelligent, and very drsclafani.

But he had rushing of his own to do, off to do a procedure. I was there for the ultrasound, I was soon called in by Dara, the ultrasound tech, who was training in Amy, from the Del Mar clinic, on the transcranial doppler. It was an Esaote MyLab25Gold machine, very nice:
http://www.esaote.com/modules/core/page ... GOLD&t=SPE

Dara and Amy both set to work on capturing images. With Dara training Amy, I got to listen along, and I could follow most but not all of what they were discussing. Right away in my right jugular, they captured the valve down at J1 and the reflux it is causing, and between themselves mentioned that this met the criteria, so there I was, two minutes into the ultrasound and officially again diagnosed with CCSVI.

It went on much longer than that, perhaps an hour? I had to take deep breaths, in and out, at times, which made me feel dizzy and unwell. My deep breaths are not very deep, truth be told, but I tried. At one point, they could not get a measurement of my upper left jugular, but when I accidentally turned my head toward them to follow the conversation, they got excited, because they'd gotten the jugular. I turned my head back to face forward, the jugular was gone. It's fun, too, to have a little validation there, because that's the way I deliberately position myself (looking to the right, never the left) if I am at a movie or talking to someone or playing UNO with my son.

They imaged my verts too, I have beautiful verts.

Then the ultrasound was done and I was dizzy and unwell and we got car service back to the hotel. I am back to the dubious joy of resting this afternoon while my husband and daughter have the more definite joy of exploring Manhattan. I got a taste of it last night, I love NYC as much as ever. The subways are fun, the people on the subways are an eclectic mix, the flow of people once we got there is just surreal, so many people, where you feel insignificant because you are just one person and yet significant because of the sheer number of us all going, going, wherever we are going.

Sorry for rhapsodizing, but if there is a city worth rhapsodizing over, it would be New York.

Tomorrow at last is my procedure. I will let you know how it goes.

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Post by burg » Fri Feb 11, 2011 12:00 pm

Good Luck Cece!!!
If you need anything in NY, PM me.
9 pages....wow...everyone is watching..We all counted with you.
praying for you girl....

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Post by CenterOfGravity » Fri Feb 11, 2011 2:00 pm

Good Luck Cece!!!!!!!

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Post by jozee » Fri Feb 11, 2011 2:12 pm

Good luck Cece!!!

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Post by MS_HOPE » Fri Feb 11, 2011 3:33 pm

Wishing you the very best possible outcome, Cece! You've been such a wonderful, supportive, informative and witty presence here on TIMS, and I'm sure many eagerly await your news. But be sure to take good care of yourself, first. We can wait.

Hope you can get to enjoy some of NYC after the procedure - in a calm, restful manner of course!

CCSVI:  Making Sense of MS

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Post by TMrox » Fri Feb 11, 2011 3:38 pm

Cece, best of luck :D !!!!

Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.

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Post by Kathryn333 » Fri Feb 11, 2011 4:00 pm

Cece, you’ve been so helpful to all of us over the last year. You’ve been patient, oh, so patient, and it’s finally happening. Good luck tomorrow. We look forward to the flow of your detailed updates on your progress. :D

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Post by Blaze » Fri Feb 11, 2011 4:19 pm

What a fabulous early valentine for you! We are sending love and cyber-hugs--to both you and Dr. S.

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