Cece's turn

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

Postby munchkin » Mon Jul 18, 2011 6:24 am

Well said Thekla
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Postby pklittle » Mon Jul 18, 2011 6:51 am

Eric, you can't be serious in your accusations. 8O

"Full disclosure” reminds me of a song in the musical The Addams Family.

Addams Family - Full Disclosure

http://www.youtube.com/watch?v=oldCRTZcMzM

..............
Full disclosure!
It's a game that we play
Let your darkest secrets
Give you away
Face your demons
And then happily say
I'm playing
Full disclosure
With all these crazy happy people

...............

Sorry, I love Broadway musicals, what can I say... carry on.
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Postby Cece » Mon Jul 18, 2011 6:56 am

Was the Book of Mormon as good as expected, pklittle?
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Postby pklittle » Mon Jul 18, 2011 7:04 am

Cece wrote:Was the Book of Mormon as good as expected, pklittle?


It sure was! Very funny. I find going to concerts, shows and movies to be a great way to get my mind off of my illness.
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Postby Donnchadh » Mon Jul 18, 2011 7:05 am

Maybe it's time for people interested in CCSVI treatment to find a less hostile forum?

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby bestadmom » Mon Jul 18, 2011 7:08 am

It's hostile because the trolls need to have a purpose in life. If only they could redirect their energy to do something positive.....
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Postby Cece » Mon Jul 18, 2011 7:31 am

Last big show I went to was Wicked, a few years ago. That was well done.

My husband thinks I should not assume that I can't sit through a long show, because maybe I can now. :!:

Want to hear something that amused me at the symposium? I cannot right now remember who it was, but someone asked me what I was drinking, then saw it was red wine and laughed and said, "Of course, red wine!"

You all know a lot about me....

Bestadmom responded in person to a post I'd made here (about enjoying seeing children in Brooklyn, when you don't see them in Manhattan). Apparently there ARE children in Manhattan, just not in the downtown areas.

I was told by two different people that they don't post here at TIMS but they read it. I was at a disadvantage! They knew me and I did not know them. (If you are reading this, come post!)
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Postby Donnchadh » Mon Jul 18, 2011 7:32 am

As far as "disclosure" is concerned, my last CCSVI treatment was done by Dr. Makris who is part of American Access Care.

I have no financial interest with the Doctor or AAC. None. Zip. Nada.
My only relationship with Dr. Makris is that of being one of his patients.
I am still paying off the last procedure. I had to cancel my scheduled follow-up ultrasound testing because I don't know what Medicare will pay. I haven't received an Explanation of Benefits statement from the first ultrasound yet.

I write about my experiences in the hope it might help someone else. I do give out Dr. Makris' business cards to every MS sufferer who expresses an interest in CCSVI.

As far as use of IVUS is concerned, Dr. Makris said he would like to use that technology but there is a cost concern. It's not cheap, and can only be used once.

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby David1949 » Mon Jul 18, 2011 10:05 am

Two ways to deal with trolls:
1) Ignore them and let their comments fall into obscurity.
2) You cannot escape trolls by moving to another site. They will soon show up there too. Just stop being polite. Tell the moron trolls to go f*** themselves. There are way more of us than there are trolls. Make sure they get blasted with unkind comments every time they post.
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Postby MrSuccess » Mon Jul 18, 2011 11:27 am

as with all things in life ...... there is a blurred line between fact and fiction .

this blurred line is the area of our many discussions here at TIMS.

Some ..... are working hard at providing clarity . Others ..... the opposite.

nevertheless ........ all opinions are considered.

there is another blurred line to deal with ....... at what point is an opinion moved from , unpopular , outragous , ill concieved ........ to out and out trolling ?

Some here on TIMS have had the nerve to label Mr.Success .... a Troll :twisted: , when he gave an opinion on a sensitive issue.

Let's be careful with hanging that label around necks .

Save it for the worst of the worst. :idea:





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Postby Cece » Mon Jul 18, 2011 12:33 pm

David1949 wrote:Two ways to deal with trolls:
1) Ignore them and let their comments fall into obscurity.
2) You cannot escape trolls by moving to another site. They will soon show up there too. Just stop being polite. Tell the moron trolls to go f*** themselves. There are way more of us than there are trolls. Make sure they get blasted with unkind comments every time they post.

I do not think unkindness is the way to go.

On the side of my screen I have a post-it note (electronic, not actual, part of the Windows7 post-it note desktop app, great program...) with contact info for a number of doctors, because we get asked about specific contact info so often. A few of them are AAC docs but the majority of them are not. I should add Dr. Ponec to the list though, I heard him speak at the symposium and he came across very well.
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Postby Cece » Mon Jul 18, 2011 1:30 pm

My left jugular during procedure #1 in February:
Image
The first image is before the ballooning. You can see the very tight, near total 99% stenosis.
The second image is the ballooning. Notice the waist on the balloon.
The third image is a subsequent ballooning. Notice that the waist is gone.
The fourth image is the flow at the end of the procedure. Compared to the first, it looks much healthier.
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Postby Cece » Mon Jul 18, 2011 1:35 pm

My left jugular during procedure #2 in July:
Image
The first image is the jugular before the treatment. It is not as bad as it was initially back in February nor as good as it was post-treatment in February. It is wide in the midregion of the jugular and narrow at the top and bottom. The narrowing at the top is physiological and does not need to be treated.

The second image is the first ballooning. Notice the waist. Also notice that it's a pretty short balloon.

The third image is a subsequent ballooning. It still shows a waist. The balloon looks much longer. It does not appear that the waist resolved.

The fourth image shows the flow after the procedure. It is improved from the first. But I do not know how durable this will be.
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Postby David1949 » Mon Jul 18, 2011 2:03 pm

Cece wrote:
David1949 wrote:Two ways to deal with trolls:
1) Ignore them and let their comments fall into obscurity.
2) You cannot escape trolls by moving to another site. They will soon show up there too. Just stop being polite. Tell the moron trolls to go f*** themselves. There are way more of us than there are trolls. Make sure they get blasted with unkind comments every time they post.

I do not think unkindness is the way to go.



Cece you are a very polite and nice lady. I am quite certain that you could not say the things I suggested in my option 2. I think the best option for you is to simply ignore them. I'm not as polite as you are and am capable of being very obnoxious with trolls, although I generally prefer to just ignore them. When I see the name of a known troll I just skip over that comment. The trolls I see here want MSers to live in perpetual misery, devoid of all hope. Some of them seem to take delight in that. I have no use for such people.

Please excuse me for using the terms I posted above. They're directed at the trolls, not at you.
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Postby Cece » Mon Jul 18, 2011 3:52 pm

it's understandable, David, what is to be avoided is getting inflamed by inflammatory comments, you don't want to be dragged down....
And MrSuccess makes a good point....
but moving on to my right jugular....
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