Annette Funicello

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

Re: Annette Funicello

Postby 1eye » Sun Oct 14, 2012 4:55 pm

erinc14 wrote:
Cece wrote:
erinc14 wrote:i was wondering if this was going to get people's attention like w5 did three years ago .

I would have liked for it to be aired in the US and to get that sort of attention here. :sad:



:? you notice nothing big (like 60 minutes or 20/20) has ever been aired in the US about this .


I don't know. I live in the nation's capital, and I watched W5 last night and it seemed like the whole thing was about LLoyd Robertson, and prescription drugs, but I must have missed Annette if she was on.
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Re: Annette Funicello

Postby Cece » Tue Oct 16, 2012 4:41 pm

Wheelchair Kamikaze offers his response and reactions after watching the program.
http://www.wheelchairkamikaze.com/2012/ ... truth.html
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Re: Annette Funicello

Postby Cece » Mon Mar 11, 2013 10:14 am

https://www.facebook.com/AnnetteFund
"Glen brought in Annette today for a follow-up visit. Since my last visit with her following the CCSVI procedure, her condition generally appeared stable, and Glen noted that her swallowing remained improved. It was my personal observation today, that she seemed much more responsive to my verbal conversation with her. She made clear eye contact with me suggesting improvement in both her vision and cognition that had been damaged by the severity of her chronic progressive MS. She clearly was trying to respond affirmatively to yes and no questions with appropriate facial movements. I have not seen this degree of attentiveness and responsiveness by her in years. It was quite heartening.

While MS can certainly fluctuate in it's severity in neurological deficits on its own without any intervention, and Annette's case remains one that is advanced and severe, it is hopeful that the improvements noted by Glen, and now myself may suggest some clinical benefit to Annette from the procedure. If the improvements noted are due to CCSVI in a patient with such advanced disease, this gives even more hope for even greater benefit to those patients with chronic progressive MS who have less advanced disease, to stabilize and improve their conditions before their neurological deficits become more permanent and severe."
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Re: Annette Funicello

Postby Anonymoose » Mon Mar 11, 2013 10:33 am

Thank goodness!
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Re: Annette Funicello

Postby DougL » Mon Mar 11, 2013 11:00 am

It was my personal observation today, that she seemed much more responsive to my verbal conversation with her. She made clear eye contact with me suggesting improvement in both her vision and cognition that had been damaged by the severity of her chronic progressive MS. She clearly was trying to respond affirmatively to yes and no questions with appropriate facial movements. I have not seen this degree of attentiveness and responsiveness by her in years. It was quite heartening.


is it possible that we as caregivers (or Doc's) are also subject to the placebo affect (or should I call it wishfull thinking)?

may times i have questioned my observations about my wife's improvements. are they real or am i just wishfull thinking.
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Re: Annette Funicello

Postby cheerleader » Mon Mar 11, 2013 12:59 pm

DougL wrote:
It was my personal observation today, that she seemed much more responsive to my verbal conversation with her. She made clear eye contact with me suggesting improvement in both her vision and cognition that had been damaged by the severity of her chronic progressive MS. She clearly was trying to respond affirmatively to yes and no questions with appropriate facial movements. I have not seen this degree of attentiveness and responsiveness by her in years. It was quite heartening.


is it possible that we as caregivers (or Doc's) are also subject to the placebo affect (or should I call it wishfull thinking)?


I think doctors are more aware of this, Doug. Facial movements, improvements in vision and cognition are quantifiable. And this doctor was very dubious about CCSVI venoplasty. For him to go public with this comment, after seeing Annette progress for many years, is important.
Annette's doctor went on the record with Avis Favaro and CTV, stating that although he was "initially skeptical", he now sees clinical benefit to her treatment. This is not supposed to happen in chronic progressive MS. This is why the Annette Funciello story was re-broadcast on CTV this past weekend, and updated at the end of the segment with this new information from her doctor.
http://www.ctvnews.ca/video?clipId=881246
(also want to note that Annette was treated with stents...a controversial subject for many, but something that made a durable change for my husband, too.)

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dx dual jugular vein stenosis (CCSVI) 4/09
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Re: Annette Funicello

Postby erinc14 » Tue Mar 12, 2013 6:15 am

oops , i posted again , sorry .
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