Cece's turn

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

Postby hopeful2 » Sun Feb 13, 2011 8:40 pm

Cece:

It's been great to follow your adventure and I'm so glad things went really well for you! I was thinking about you all day yesterday---and totally relieved when I saw the post that you were out of the operating room and feeling good.

How is your neck feeling today? I hope that discomfort is easing up for you. :)

Patrice
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Postby Cece » Sun Feb 13, 2011 9:53 pm

hopeful2 wrote:Cece:

It's been great to follow your adventure and I'm so glad things went really well for you! I was thinking about you all day yesterday---and totally relieved when I saw the post that you were out of the operating room and feeling good.

How is your neck feeling today? I hope that discomfort is easing up for you. :)

Patrice

I can tell when the tylenol wears off, but I take two more and I'm good again. It's better than yesterday. I feel for those who have said they still have it months later! But I also had neck pain prior to the procedure and that was fixed by the procedure itself, so this being a different version of neck pain, well, I am used to pain.

I am not used to these newly invented colors....here in the hotel, it's rather muted decor, so most things are in a color I was already seeing. So there are just these few objects - a bright red shirt, my daughter's bright blue headphones - that jump out unnaturally. It's pretty but disconcerting. I am not complaining though....

Tomorrow we have some touristy plans, I am curious how I will hold up.

Thanks Patrice :)
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Postby Cece » Sun Feb 13, 2011 10:14 pm

CCSVIhusband wrote:So any input on that azygous from 1/3 from any colleagues? with a similar phasic narrowing - just in a different vein? the opening and closing is normal in that case?

That was an odd phasic narrowing, wasn't it? A focal narrowing, where it looked like it kinked in. I am curious too if he's had any further thoughts on it. CCSVIhusband, you sound like you are not convinced that it should be left alone and not stented? I hope you will give it time, there is such a wave happening now with patients who have stents getting retreated that it should be becoming more obvious what the safety profile is.
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Postby CCSVIhusband » Sun Feb 13, 2011 10:33 pm

Cece wrote:
CCSVIhusband wrote:So any input on that azygous from 1/3 from any colleagues? with a similar phasic narrowing - just in a different vein? the opening and closing is normal in that case?

That was an odd phasic narrowing, wasn't it? A focal narrowing, where it looked like it kinked in. I am curious too if he's had any further thoughts on it. CCSVIhusband, you sound like you are not convinced that it should be left alone and not stented? I hope you will give it time, there is such a wave happening now with patients who have stents getting retreated that it should be becoming more obvious what the safety profile is.


It's not that I'm unconvinced (nor that I'm convinced) ... just curious - because, as you said, I don't think it's 'normal' ...

and I think it was treated the first time around, and the results ... well I won't get into it on your thread.

Hopefully our good doctor is thinking about it though.
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Postby HappyPoet » Mon Feb 14, 2011 1:10 am

HAPPY HEALING, CECE.
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Postby Bizzy » Mon Feb 14, 2011 8:16 am

Wow, just catching up on all the posts here since I have not been on for a few days. I'm so happy for you Cece. It took me a couple of weeks before the discomfort in my neck subsided and Tylenol helped.

Thank you Dr. Sclafani for posting Cece's results since, I like everyone here, will be following her progress. I'm glad you liked the gift, Cece put together. I also feel blessed to have had the procedure done by you.

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Postby pklittle » Mon Feb 14, 2011 9:00 am

tzootsi wrote:
Cece wrote:
tzootsi wrote: Have a chocolate egg cream while you are in Brooklyn!

a chocolate egg cream - is this a Brooklyn delicacy?


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!


Kind of sounds like an ice cream soda that we used to get when I was a kid in PA.
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Postby Cece » Mon Feb 14, 2011 3:32 pm

Day two and counting.... ;)

A bit of a mixed bag today. The colors remain intense. My left arm numbness, from my relapse back in June, has been retreating. It's the best it's been since before the relapse. What remains only goes up to the elbow and not the shoulder. It has come and gone some since the actual relapse but this is more gone-gone.

I was again able to enjoy myself so much more, at least this morning. My thinking is clearer! I am still thinking the same thoughts, but quicker and more able to think when there is noise or things happening around me.

My daughter enjoyed me being playful with her. I put my translucent face powder on her, she did not turn into a ghost.

back in a bit, with the 'mixed bag' part of this post....
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Postby MaggieMae » Mon Feb 14, 2011 3:40 pm

Cece,

How many days does Dr. Sclafani recommend that you stay in NY (after your procedure) before returning home or flying?
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Postby Blaze » Mon Feb 14, 2011 4:37 pm

Happy Valentine's Day Cece. Thanks for sharing your love, commitment and determination with all of us this past year.

You deserve the best!
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Postby Cece » Mon Feb 14, 2011 4:41 pm

MaggieMae wrote:Cece,

How many days does Dr. Sclafani recommend that you stay in NY (after your procedure) before returning home or flying?

I can't quite remember. (drsclafani, this one's yours to answer....) I had the procedure Saturday, I'm flying out Tuesday, but that was longer than necessary.

But, that's good, because I "overdid" today. Overdid in quotes, because I have underdone by any reasonable tourist standards. Yesterday we were in the hotel except for about two hours in the later afternoon; today we were in the hotel except for maybe four hours.

We took the subway in to Central Park. There was a young chinese woman on the subway with a purple hat and scarf in an intense hue such as I have never seen before. There were brick walls that we passed by that were freakishly red.

Central Park is a marvel, even if you only stand on its edge and peer in as we did. The buildings surround it, so much taller than the trees. (Do trees get jealous? Or are these trees used to being the little brothers.) Then we walked a bit, with the street straight forward and the buildings straight up in angular perfection. By the time we got to MOMA, I was a little unwell, but we toured a bit, then had a bite, I was hoping that eating would make me feel better.

We were having fun and it has been more pure fun and not fun-but-in-pain as I'm used to. My daughter impressed me by recognizing a number of pieces that she'd seen in school, and getting her picture taken by them, and excitedly talking about how she will show the pictures to her art teacher.

But I was getting worse and then, total MS crash. "Overdid." When I'm spiraling downward like that, the way to stop the spiral is to get away from stimulation and to lie down. Yeah, I was in Manhattan, how do you get away from sights and sounds? My husband was worried. It was a surreal stretch of time from when I crashed to when we made it out of the museum, down streets looking for a subway, to a McDonalds because my daughter needed a restroom, to a subway, a stop later switching stations, then all the way back to the hotel.

I improved some during the walking to the subway, which is unusual.

I am better now. It did not take too long to feel better.

I would have liked these MS crashes to have been pure blood flow-related, instead I think they must be the brain shutting down somehow when it has been overtaxed? I am not sure. But perhaps I can separate out the things that have improved as being blood-flow-related, and I have had good improvements, from any things that are not improved, which I would say would be neurologically caused. My cogfog is vastly improved, but it is not gone. Clearly my "sudden unexplainable fatigue" or MS crashes are not gone. My constant every minute of the day fatigue is gone.

My mild foot drop, which has to be neurological, is gone. It would show in my gait, where my foot would not place straight forward as it should but come down a bit off and be a bit difficult; it was from a relapse five years ago and, while mostly improved, MS leaves its traces and this was still there. It had never been as gone as it is now.

Mixed bag or not, my doctor worked miracles in an hour-and-fifteen-minute procedure.
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Postby pairOdime » Mon Feb 14, 2011 4:43 pm

Thanks for sharing CeCe. We are looking forward to the new & improved CeCe here on TIMS. Here's to continued healing and additional improvements.
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Postby marcstck » Mon Feb 14, 2011 7:08 pm

Thanks for the update, Cece. Glad you could make it to Central Park, which is my favorite part of living in New York City. I don't know if you've ever checked out the wheelchair photos (more correctly, photos I take from my wheelchair mounted camera) on my blog, but many of them were taken in Central Park.

Sorry about your MS episode at the Met, but keep in mind you only just had the procedure, and it may take a while for all of your benefits to show. I know I don't have to tell you that, but I did anyway…

Get home safely, and rest up. Pamper yourself for a while, maybe even take a break from this place (not too long) to give yourself a chance to adjust to your new "normal"…
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Postby Drury » Mon Feb 14, 2011 8:10 pm

Cece,

We have been thinking about you all weekend and are delighted with your improvements although rather in awe of all that you have done so far.

Thank you for taking the time to share all your experiences with us and really hope you can take it easy when you get home. I like what Marc said about pampering yourself and giving yourself time to adjust to your new "normal."

Wishing you a safe journey and continued benefits.

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Postby drsclafani » Mon Feb 14, 2011 9:15 pm

Cece wrote:
MaggieMae wrote:Cece,

How many days does Dr. Sclafani recommend that you stay in NY (after your procedure) before returning home or flying?

I can't quite remember. (drsclafani, this one's yours to answer....) I had the procedure Saturday, I'm flying out Tuesday, but that was longer than necessary.


we had discussions about this on tims months ago and i took that conversation to heart.

there is no data on how long to avoid flying but i thought that three days was a fair compromise.

besides, i think it is not correct to come to new york, get liberated and not enjoy my fine backyard.

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:
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