Cece's turn

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

Postby NZer1 » Tue Jul 12, 2011 8:22 pm

Cece thanks for your reply.
Has Dr.S been talking about this on his tread, I have not been following it and I must take time to catch up.
I am imagining that he is thinking full time more about the difficult and unusual cases, to get a better understanding of what treatment is going to be required.
Take your time and be well.
Nigel
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Postby drsclafani » Wed Jul 13, 2011 3:49 am

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


For those that do not realize, the temperature in NYC yesterday was upwards of 93 officially. My wife's car clocked the T as 97. Humidity was above 80%.

So your six hours was quite a feat my friend
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Postby munchkin » Wed Jul 13, 2011 12:51 pm

It's great that Dr.Sclafani was able to treat the issue. Maybe this time is the keeper. It's sounds like you made it through a hot and humid day with flying colours.
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Postby Cece » Wed Jul 13, 2011 2:43 pm

Today we stayed local, it was much easier.

Walked across Prospect Park, got pictures by a waterfall and an arch tunnel. Made it to our destination, Brooklyn Botanical Gardens. I was charmed by the Shakespeare garden. I was also charmed by the existence of children in NY. They are noticeably absent in Manhattan.

Now we are going to to eat at either Bark Hot Dogs or Stone Park Cafe. I have a sinking feeling my husband will be picking the Hot Dogs....

I am not as tired as I was yesterday or the day before or the day before that, for that matter. (The travelling day.)
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Postby Cece » Wed Jul 13, 2011 2:49 pm

NZer1 wrote:Cece thanks for your reply.
Has Dr.S been talking about this on his tread, I have not been following it and I must take time to catch up.

I don't think he has been talking about it particularly. It wasn't anything unusual, as far as I understand, just simple restenosis of the valves. Now I wonder if the right side will close up at some point in the future? Durability....
I am imagining that he is thinking full time more about the difficult and unusual cases, to get a better understanding of what treatment is going to be required.
Take your time and be well.
Nigel

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Postby Cece » Thu Jul 14, 2011 9:09 am

We have left Brooklyn behind and are now in the Times Square hotel, ready for the symposium patient day tomorrow!
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Postby MrSuccess » Thu Jul 14, 2011 10:21 am

TIMS couldn't get a better person to be attending that meeting ........

I look forward to reading your take on it all , Cece.



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Postby fogdweller » Thu Jul 14, 2011 10:31 am

Cece wrote:We have left Brooklyn behind and are now in the Times Square hotel, ready for the symposium patient day tomorrow!


Please start a separate thread dedicated to that. You probably were going to anyway. I sure will look forward to it!
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Postby Cece » Thu Jul 14, 2011 1:13 pm

I will definitely be sharing my impression of patient day...but do we have anyone attending the two doctor days who is willing to tell us everything??
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Re: CCSVI Symposium

Postby NHE » Thu Jul 14, 2011 9:59 pm

Cece wrote:I will definitely be sharing my impression of patient day...but do we have anyone attending the two doctor days who is willing to tell us everything??


Or better yet, record it so we can listen for ourselves.

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Postby Cece » Fri Jul 15, 2011 8:35 pm

drsclafani wrote:Yes Cece
although you have a copy of the images, perhaps it would be good for you and your fans to review here as you suggest.

The sequence was as follows
1. prep and drape
2. time out
3. cath in left femoral under local anesthesia
4. advancement into right jugular, venogram, ivus, 18 mm angioplasty to thirteen atmospheres, repeat venogram
5. advancement into left jugular, venogram, ivus, angiopasty to 14 mm at ten Atm, repeat venogram
6. advancement into azygous vein, venogram of ascending azygous followed by zero, twenty, seventy and ninety degree views of the azygous arch
7. IVC venogram
8 ascending lumbar venogram

This is from my procedure back in February. Left jugular was originally ballooned to 14 mm at 10 atm. This time it was 10 mm as the most appropriate balloon size. He's grown more conservative. Only after it did not fully resolve, he went up to 12.
Image
There's what my left jugular looked like pre- and post-ballooning back in February. When I get home, I'll have a cd drive, so I can look at the new images from the procedure this week.

That first one looks dreadful, doesn't it!
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Postby Cece » Sat Jul 16, 2011 3:46 am

Once again I am leaving NY with brightened colors. The blue and red from my little cutesy icon are popping out at me. So are the red fish on my toiletries bag. (It's blue sharks, chasing red fish. Technically it belongs to my children.)

time to go....
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Postby Donnchadh » Sat Jul 16, 2011 4:07 am

Cece,

Has Dr. Sclafani approved your residency yet? lol :wink:

Stay well!

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Postby CD » Sat Jul 16, 2011 5:53 pm

Cece, have a pleasant and safe trip home. I hope all your veins stay open and flowing for good. Enjoy the colors and brightness in the eyes of your children, and husband too. Do you have those blue eyes too?
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Postby Cece » Sun Jul 17, 2011 6:37 am

Yes, CD, I have blue eyes, my husband has brown, and we kept waiting for a brown-eyed child to turn up but all three came out with blue eyes. It was so good to hug my kids again after getting back!

Donnchadh, alas, no...but what an opportunity it has been to learn here in his thread. :)

I looked around at the symposium and I did not see Dr. Neuro Olojist anywhere. Perhaps he is off somewhere playing with mice.
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