Cece's turn

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

Postby Cece » Mon Feb 14, 2011 8:22 pm

You all give good advice here, it's true. Those sweats that were recommended, I needed them the day of the procedure and the day afterwards. So taking a break may well be good advice too.... ;)

passing thoughts:
Dr. Sclafani did an excellent job on my procedure.
I feel incredibly fortunate.
Of course I want to come check this thread, what an outpouring of well wishes and kind words it has been, a girl could get used to this....
I've made arrangements when I get home for a few things that I normally do to be done by others, I am taking care of myself there.
My husband commented that, when talking to Dr. Sclafani, we kept using words he was unfamiliar with. Hypoplasia, annulus, who knows what exactly. My thoughts are, first, what a pleasure it has been to talk with Dr. Sclafani about all things ccsvi, and second, I fear I now know that my husband has not been listening to me or he would know these words. But he is still my valentine.
The word that keeps coming to mind to describe how I've been feeling ever since the procedure is euphoric.
I will probably be away from TIMS for the next twenty-four hours, that will count as a break? Because I have hardly described my impressions of the procedure or finished reponding to Dr. Sclafani's post with my images on it.
Much more to be said, but yes, it does not need to be said all at once.
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Postby Cece » Mon Feb 14, 2011 8:26 pm

drsclafani wrote:i would prefer patients to take a week but who can afford it at any rate i warn all my patients to take it easy but some, ahem will overdue it because its a helluva town, broadways up and the battery is down....i guess cece's battery just got run down :lol:

but I have some fine new rechargeable batteries, it seems....I felt better this evening than I have felt in years.
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Postby CaptBoo » Mon Feb 14, 2011 8:30 pm

If I'm remembering my pilot training a few decades ago, commercial airlines pressurize the cabin to the equivalent of 5,500 feet altitude above sea level. I live at 7,000 feet. For me the plane ride is more pressure than home. If I had the procedure close to home, would you recommend I not drive to the house for three days? Of course it is a rhetorical question since the only places I've heard of doing it are near sea level. Could this be a factor?
<div>There be no dragons   ...Reese Palley</div>
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Postby MrSuccess » Mon Feb 14, 2011 10:06 pm

Cece - hide out for a few day's ..... maybe a week .

I am as interested as anybody ..... to read your updates and experiences ...... but ......... you need to take care of yourself .

Get lot's of rest .



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Postby 1eye » Tue Feb 15, 2011 11:17 am

Don't be surprised if you backslide a little. Don't be surprised if even your new rechargeables give out on you, but know this:

If your experience is anything like mine, you will notice eventually that you will continue to improve, and that improvement, though slow sometimes, has become the new norm. I still can't walk (funny to read about gait when you don't really have one), but I put on my clothes almost all standing up today! I sang a song today, while playing, for the first time in years and years. Seems like forever, but it seems also like yesterday. Like Pete Seeger said about playing guitar, it's like walking: takes about a year to learn, after that it comes natural.

I still get worse at about 6PM, but didn't that used to happen at about 4?

Welcome back to the world. (-: :) :)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby THEGREEKFROMTHED » Tue Feb 15, 2011 2:07 pm

Mixed bag or not, my doctor worked miracles in an hour-and-fifteen-minute procedure.


CECE, congratulations on your successes thus far and the ones coming in the future! Boy has this guy gotten good considering I think I was flat for a fuzz over three hours on his guerny! Wadda you think if I give it another year Sal, 1/2 hour?

Exciting stuff...please though Cece calm down..rest...dont push it...there will be plenty time to celebrate!
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Postby Cece » Tue Feb 15, 2011 4:39 pm

1eye wrote:Don't be surprised if you backslide a little. Don't be surprised if even your new rechargeables give out on you, but know this:

If your experience is anything like mine, you will notice eventually that you will continue to improve, and that improvement, though slow sometimes, has become the new norm. I still can't walk (funny to read about gait when you don't really have one), but I put on my clothes almost all standing up today! I sang a song today, while playing, for the first time in years and years. Seems like forever, but it seems also like yesterday. Like Pete Seeger said about playing guitar, it's like walking: takes about a year to learn, after that it comes natural.

I still get worse at about 6PM, but didn't that used to happen at about 4?

Welcome back to the world. (-: :) :)

1eye, hugs, we made it to the other side, didn't we.

It's too much (but I'll take it) to have instant improvements and gradual improvements, but I think you are right, this could go even further up from here. Or down, with restenosis. What Jugular said a bit back - how do you get to not be paranoid about restenosis - I don't know, I'm in the boat with him.

We are home now, I am lying flat when I want to be up and putting everything to order....
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Postby nellie » Tue Feb 15, 2011 5:07 pm

Cece--Welcome back. Glad you're doing well & experiencing positive improvements. Miss your views & expertiese on the forum but know you need to rest for now.
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Postby Cece » Tue Feb 15, 2011 5:21 pm

THEGREEKFROMTHED wrote:CECE, congratulations on your successes thus far and the ones coming in the future! Boy has this guy gotten good considering I think I was flat for a fuzz over three hours on his guerny! Wadda you think if I give it another year Sal, 1/2 hour?

Exciting stuff...please though Cece calm down..rest...dont push it...there will be plenty time to celebrate!

The procedure went faster than I expected. :)

The numbness is now entirely gone from my left arm. It was only half gone yesterday.

My children and I all have blue eyes. Blue is one of the colors that has changed for me. My children's eyes, and my own in the mirror, are a different shade of blue. Not vastly different, but subtly richer, subtly brighter, how do you explain hues and tones, I need to have taken an art class to get this terminology right.

I am as calm as I can be with all this weirdness afoot....
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Postby Cece » Tue Feb 15, 2011 5:26 pm

nellie wrote:Cece--Welcome back. Glad you're doing well & experiencing positive improvements. Miss your views & expertiese on the forum but know you need to rest for now.

thanks nellie
thank goodness for social networks and forums and the original pioneers and everyone here or I would not have known about CCSVI.
80% and 100% blocked....I needed this procedure.
very very grateful.
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Postby HappyPoet » Tue Feb 15, 2011 6:25 pm

Cece,

SO HAPPY to finally hear from you!! :D
SO HAPPY you're home safe 'n sound. :D
SO HAPPY you're resting 'n not cleaning. :D
SO HAPPY the numbness has left your arm. :D

:D :D :D
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Postby Cece » Tue Feb 15, 2011 6:31 pm

Should I edit out the part about my kids' eyes being a richer shade of blue? It sounds crazy to me, even though it is true. Nothing quite like MS, is there. First the disease itself results in all kinds of invalidation (you're just lazy, it's all in your head) then the liberation also feels set up for invalidation (placebo, crazy talk, you just want to feel better so you think you do).

My husband walked by and said, "It's amazing. It's like a miracle cure."

First thing my dad said when he picked us up at the airport was, "You look better."
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Postby Cece » Tue Feb 15, 2011 6:43 pm

tzootsi wrote:I haven't been to the New York area in many years, but I had many chocolate egg creams at various soda fountains there. A chocolate egg cream is a concoction of chocolate syrup, seltzer, and milk- very delicious!

I missed it in NY, but I'll look up the recipe and have one with my son.

http://www.wikihow.com/Make-a-New-York-Egg-Cream
Last edited by Cece on Tue Feb 15, 2011 10:46 pm, edited 1 time in total.
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Postby Brainteaser » Tue Feb 15, 2011 6:49 pm

Fabulous Cece!

Dr Sclafani sounds a wizz...............does he do house calls? Melbourne's wonderful this time of the year.
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Postby blossom » Tue Feb 15, 2011 6:53 pm

cece, so happy you are doing so well. hopefully these improvements are just the tip of the iceburg of the many improvements coming your way.

relax, enjoy and be happy.
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