What's new with...

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

What's new with...

Postby Gardenia » Tue Mar 06, 2012 2:35 pm

I was just wondering what is new with Denise Manley a nd Linda Roussey (?)? They had posted alot of post procedure youtube post...I was just curous how they are doing, are they still doing well? :smile:
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Re: What's new with...

Postby cheerleader » Tue Mar 06, 2012 4:17 pm

Linda Rousay is doing really well. She was recently evaluated by a group of neurologists at a local NMSS meeting. She discusses it on her blog:

When she was finished, they all agreed that I “appeared” to have no clinical signs of MS. Finally Dr. Rivers said, ” I was this woman’s neurologist many years ago. She had RRMS. I read her chart and wanted to be here to see for myself. She went on to explain the MS symptoms I had as her patient. When there was an objection, she said,” I have never seen this level of improvement in an MS patient. After reading the doctor notes of successive physicians, and her severe level of disability two years ago, I concede that this dimension into the causal factors of MS demands more consideration.”

http://ccsvimammananny.blogspot.com/


Denise Manley is very involved in the Facebook community, as an advocate. She fundraises for Dr. Siskin's trial, and is doing really well.
Both women claimed they were SPMS when treated, and are now up and active and doing well.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: What's new with...

Postby Gardenia » Tue Mar 06, 2012 6:56 pm

Such good news and very encouraging!
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Re: What's new with...

Postby gabbycats » Wed Mar 07, 2012 11:37 am

I don't go on thisisms and one of the elders here summed it up. Alive and well and not suffering from SPMS although I'm not 100% symptom free, I can still jump and have balance, as well my bladder is still functioning. I've also learned that I had venous reflux in my legs and recently had vein ablation to the saphenous veins.. Still in a healing mode for that. I'm looking into ways to remove intimal hyperplasia from the stents as it is impeding blood flow is causing reflux and some headaches. :-D

Denise Manley
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Re: What's new with...

Postby Gardenia » Thu Mar 08, 2012 7:15 pm

:wink: I'm glad you are better, Denise, that is good news!
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Re: What's new with...

Postby mammananny » Thu Mar 08, 2012 8:11 pm

I drop by rarely to see what's new. I am doing quite well. The only significant symptom that remains is heat intolerance. After the first procedure it seemed to improve somewhat, but that was very short lived.I can jump but prefer roller skating with my grandchildren. I posted a video doing just that in July of last year. I broke my arm on the second visit to the roller rink and had to wait for that to heal. I went back for my birthday last month and managed to dodge kids going the wrong way that time. I am still on Facebook but have limited the groups I am in and post occasionally on CCSVI Locator and my FB page notes. I have had the opportunity to discuss CCSVI at support group meetings or events by invitation. I stay busy with my family, church, community work and CCSVI advocacy.
Thank you for asking.
Linda Rousay
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