maybe now it'll get attention in the u.s.

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

maybe now it'll get attention in the u.s.

Postby erinc14 » Thu Jan 31, 2013 8:48 am

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Re: maybe now it'll get attention in the u.s.

Postby Cece » Thu Jan 31, 2013 9:28 am

It had to be the National Enquirer... maybe somewhere more respected will pick it up?
In September 2011, Annette was tested at a private clinic by Dr. Donald Ponec, an interventional radiologist in Oceanside, Calif. The test results indicated she had a blocked jugular vein – and blood flow was 30 percent less than normal. Her left vein was completely blocked and the blood was flowing back into her brain, the testing showed.

It's a good article.
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Re: maybe now it'll get attention in the u.s.

Postby Anonymoose » Thu Jan 31, 2013 9:36 am

LOL Cece.

I was hoping she had experienced more improvements. Bummer.

It's good press for the cause though.
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Re: maybe now it'll get attention in the u.s.

Postby Luvsadonut » Thu Jan 31, 2013 9:50 am

website not available in the UK..
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Re: maybe now it'll get attention in the u.s.

Postby erinc14 » Thu Jan 31, 2013 11:30 am

Luvsadonut wrote:website not available in the UK..
:sad:
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Re: maybe now it'll get attention in the u.s.

Postby drsclafani » Thu Jan 31, 2013 8:32 pm

Anonymoose wrote:LOL Cece.

I was hoping she had experienced more improvements. Bummer.

It's good press for the cause though.



moose

i look at it differently: when you are in such a state, the ability to clear your own airway, to cough, to have enough power in your finger to move your electric wheelchair, to be able to sit up without falling over, to transfer yourself independently to the toilet, to stay awake for the hour that your grandchildren are in your presence: these are profound improvements that do not show up on EDSS scores. To some this simply means no change in objective findings. But to that one individual they are grand successes that provide a modicum of dignity in an awful situation.

These do not show up as improvements caused by CCSVI treatment but they are, nonetheless, overwhelming triumphs. It is these little things that are not recorded in trials, yet they mean so much. Remember, as i am sure you will, to hold on to empathy toward those less fortunate than us

DrS
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: maybe now it'll get attention in the u.s.

Postby Anonymoose » Fri Feb 01, 2013 8:17 am

Dr. Sclafani,

I agree the improvements you speak of are definitely a big deal and worth the CCSVI treatment.

However, my response in this instance, what I said and what I didn't say, had everything to do with having empathy for Annette and for PwMS reading this thread. We could be Annette someday. We all imagine the horror of being trapped in a state of mere existence. I don't think many of us like to think about the indignities and suffering that may come with progression (I think it's an unspoken rule here that we don't speak of progression past a certain point. It's kind of sad as it leaves a lot of people in need of support without an outlet. Maybe there should be a special forum for speaking about those issues without having to worry about causing anxiety in people who haven't reached serious disability).

I want Annette to be able to communicate...to be freed from her living hell. I won't stop wishing for unbelievable miracles for all of us.

(I do admit to sometimes lacking empathy...has more to do with being a clueless idiot than lacking heart.)
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Re: maybe now it'll get attention in the u.s.

Postby Cece » Fri Feb 01, 2013 11:11 am

Her disability is so severe. A few years ago, I was coming to grips with my own fears about wheelchair MS, and I was introduced here to the concept of Bed MS. I don't know the word to describe where Annette is at but it's past Bed MS. I wish CCSVI treatment had been around in the 80s.
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Re: maybe now it'll get attention in the u.s.

Postby erinc14 » Sat Feb 02, 2013 8:45 am

in the you never heard much about ms, never saw a commercial , nothing . it was kept hidden .
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