Cece's turn

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

Postby pklittle » Mon Jul 11, 2011 6:59 pm

yeah CeCe!! great news!

ps: seeing Jon Stewart will be awesome. I was lucky to score some tickets to The Book of Mormon. :D
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Postby Donnchadh » Mon Jul 11, 2011 9:08 pm

Cece,

Enjoy a glass of fine Italian sparkling wine with the good doctor and celebrate your recovery!

Donnchadh

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Vintage: 2009

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Size: 750ML
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby Cece » Tue Jul 12, 2011 7:38 am

@Donnchadh, thank you for the wine and the thought.
@Pklittle, I have heard good things about The Book of Mormon!

Yesterday I said my azygous was good but there is a nuance to that. It appeared that the azygous is being compressed by the aorta. It expands when I breathe in and gets small when I breathe out. My azygous is very large and has a rapid flow with no reflux.

I am happy with my azygous, it is a hard-working vein.

On the table yesterday, I knew when he was about to balloon the left jugular. It was not a fully closed vein and it's a smaller one in comparison to my right side. Because he used a small balloon, I was unsure if he'd balloned it or not; it had felt very different last time. Then I had a "What just happened?" moment. Abruptly everything felt more real. What does that mean? I don't entirely know. It may have been the fentanyl suddenly dropping in effectiveness. It seemed as if maybe they had turned up the lights. Whites seemed brighter. Then I realize that he has ballooned my jugular and that may be an explanation for this feeling of more-real ness.

He was debating with himself whether to balloon a second time or not. He absolutely did not want to damage the vein. He had gotten a good response, the flow was good again. But there was still banding on the balloon. He decided to balloon it again, with a size 12. I support that decision, just as I would've supported it if the decision was not to risk it. It is not always clearcut which way to go.
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Postby bestadmom » Tue Jul 12, 2011 7:41 am

Cece,

How are you feeling today?

mb
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Postby Cece » Tue Jul 12, 2011 8:01 am

In the recovery room, the nurse was a talker. Which was fine, once we got off the subject of his house renovation and onto the subject of CCSVI. I like to talk CCSVI. He mentioned that he'd never heard of CCSVI before last fall. When they were told they were going to be doing this, everyone working there got online that weekend and checked it out. "There's a lot of controversy online," he says. This amused me, he is right. He talked about Dr. Sclafani not wanting to do a randomized trial and Dr. Sclafani standing his ground against that and saying that anyone he touched was going to get treated. He talked about a patient who responded really well and during the follow-up, the husband was on the phone for a half-hour, saying, "I got my wife back. I got my wife back." I don't think the nurse fully understood the significance and sheer wonder of this. We've all experienced loss, not just in MS but in life itself. And we've all experienced the loss of loved ones. But to experience the return of a loved one...this is a rare experience and a wonderful one and my heart breaks in joy for anyone who gets this.
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Postby Cece » Tue Jul 12, 2011 8:20 am

bestadmom, I feel ok right now but I haven't really tried to do anything yet. I was badly tired last night. Whites still seem brighter. Also this morning when I woke up, I noticed my floaters in my eyes (like dots and little black blurs that move wherever I am looking). When I first had the procedure, this was something I noticed, that with my vision improved, my floaters actually seemed worse to me, since there was more contrast between the floaters and the world beyond it. So I wonder if I do a floater check each morning, will I notice if I start to lose the brightness? And, since I only noticed the floaters in the very first week or so after my first procedure, does that mean I was restenosing in the left jugular that early? I had a return of a few symptoms at 1 1/2 months to 2 months, is that when it happened? It was not able to be determined by ultrasound. I did not have a Zamboni ultrasound afterwards, would a Zamboni ultrasound have picked up the restenosis? Or is a Zamboni ultrasound not of use after the procedure, because once the procedure has been done there will be reflux back from the heart through the rendered-incompetent jugular valves? We have the image of my left jugular at three months here on this thread, it looks really good, could it have restenosed after that or did it simply not show on ultrasound or was the image not of the exact same place or was the slight dilatation seen in the image evidence of the restenosis that was better seen on venogram and with IVUS?

But you asked how I was feeling. I am feeling ok right now! Got a great night's sleep. I feel like I could go out and do something but am being cautious about conservation of energy.
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Postby Vivianne766 » Tue Jul 12, 2011 11:23 am

cece,
thanks for the update. keep getting better.
:)
v
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Postby MrSuccess » Tue Jul 12, 2011 12:00 pm

Cece - I do not want to hear from you ..... until friday. :twisted:

As much as TIMS people want dearly [ me too ] ..... to hear every last detail of your adventure ........ you must rest ....... and relax .........

enjoy the Big Apple .......





.... some cocktails ..... some orchids ..... a show or two ..... a line in a column .... that links me with you ........


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Postby NZer1 » Tue Jul 12, 2011 1:03 pm

Thank you Cece and Dr. S.
As a future patient this is what I need to hear. The remaining tissue from anulus popping has always been a question in my mind and it gives so much more confidence and credibility to Dr.'s when this is talked about.
Hearing people have gone for 5 treatments has been of concern when they are not able to convey what is being treated each time or what is a re-treatment of the same area for example.
As a person who needs to understand what is happening and as a person who has trust issues, it makes a huge difference when someone like Cece can communicate what is being attended to and why.
Thank you Dr. S for being up front and wanting to know what your patients treatment outcomes are and following up on the procedures when there is symptom change.
This is what we need to progress the disease knowledge. This is what we need to improve patient confidence.
All the best everyone, Nigel
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Postby Cece » Tue Jul 12, 2011 5:52 pm

[
.... some cocktails ..... some orchids ..... a show or two ..... a line in a column .... that links me with you ........

Now there is some poetry, MrSuccess.
Very nice!
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Postby MrSuccess » Tue Jul 12, 2011 6:00 pm

now close that lap top .... and take it easy .

we can wait .

Have Mr. Cece take you to one of Dr.Sclafani's recommended spots :idea:


give my regards to Dr. S ....... and Broadway :!:





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Postby Cece » Tue Jul 12, 2011 6:17 pm

NZer1 wrote:Thank you Cece and Dr. S.
As a future patient this is what I need to hear. The remaining tissue from anulus popping has always been a question in my mind and it gives so much more confidence and credibility to Dr.'s when this is talked about.

To be specific, it was residual tissue from the originally immobile fixed valve leaflet. This is what was ballooned. The annulus, or the ring around the valve, was not popped.
Hearing people have gone for 5 treatments has been of concern when they are not able to convey what is being treated each time or what is a re-treatment of the same area for example.

I know just a few people who have had five treatments, but often that is because of complications. Right now I do not know if this vein will stay open or if it will close up again (and how soon it will close, if it is so inclined) but it may be that some people need regularly scheduled balloonings (every 3 months, every 6 months, every year?) just to keep the veins open. I hope that's not me, I hope mine stay open, but I'd be ok with it if that's what's needed. It beats the alternative!
As a person who needs to understand what is happening and as a person who has trust issues, it makes a huge difference when someone like Cece can communicate what is being attended to and why.

Thank you, I certainly try....
The doctors are also learning more as they go.
Thank you Dr. S for being up front and wanting to know what your patients treatment outcomes are and following up on the procedures when there is symptom change.

He is an excellent doctor.
I got lucky when I ended up in his care.
This is what we need to progress the disease knowledge. This is what we need to improve patient confidence.

Well said.
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Postby Cece » Tue Jul 12, 2011 6:25 pm

We only just got back in. We'd been out for six hours...a bit much for the day after angioplasty!

We ate at 'Snice here in Brooklyn, then went in to Manhattan for the Colbert Report taping.

It was a good time, wish you were here, dear MrSuccess....
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Postby CenterOfGravity » Tue Jul 12, 2011 6:33 pm

Glad to hear things went well Cece!! I wish I could be at the patient day... I happen to be flying in to Newark Friday evening for a 2 week trip back east and there were other commitments here that I couldn't change. Too bad! I hope you enjoy the rest of your week there!
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Postby newlywed4ever » Tue Jul 12, 2011 6:33 pm

Cece - so glad to get back on TIMS after a week off and hear of your most recent chapter physically/emotionally/intellectually. Thanks for sharing with us; sure wish I was in NYC this week; I also wish for cooler temps :) Be good to yourself this week.
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