Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-31-2013, 06:43 PM #1
Lottie Lottie is offline
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Post NEW CRPS Institue in New York City

Here is a link to the press release

http://www.prweb.com/printer/11243687.htm

Does anyone have personal experience with this place?

~ Lottie
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1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 12-31-2013, 08:56 PM #2
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Thanks for sharing Lottie!! How did you find out about this.
Don't think I'll be able to go soon (I'm in Arizona) but this will
help countless others!!
Maybe this is another baby step further to getting some awareness
and research.
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RSD/CRPS and contracture of left hand and arm after surgery for broken wrist.
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Old 12-31-2013, 10:59 PM #3
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I happened to come across it while doing a google search about CRPS. Every once in a while I do that to see if I come across anything new. I was impressed that they actually named their center "CRPS" Institute. There is hope!!
__________________
1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 01-02-2014, 12:56 AM #4
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Quote:
Originally Posted by Lottie View Post
I happened to come across it while doing a google search about CRPS. Every once in a while I do that to see if I come across anything new. I was impressed that they actually named their center "CRPS" Institute. There is hope!!
WOW! Right on Lottie! Good find!! I had no idea. Sure wish I was closer to it though.
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 01-02-2014, 05:46 AM #5
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Thank you so much Lottie

What an amazing, to the point, let's-get-on-with-this kind of attitude. I read this wishing so much there was somewhere like this in the UK...we have the Centre for Rheumatic Diseases in Bath, but getting there is like trying to see the Queen lol, and they don't actively treat CRPS, but give their patients intensive physio, hydrotherapy and psychological counselling for a week. All of which is good, but feels much more like a 'this is it now, this is all we can do, this is learning to live with what you have left'...which lets be honest, none of us want to consider. Being out of options just doesn't seem right.

This new place sounds like it can contribute much to research as well, which is fantastic. Good on them!

Like you Lottie, I am thrilled that they have adopted the actual name of CRPS, and refer to RSD as its former name. I hope 2014 sees much more of the US embrace the new name on websites etc, and help to unify worldwide research and information.

Oh how I hope this could lead to some breakthrough that could help us all

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 01-02-2014, 11:27 AM #6
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I think im going to call and atleast see what there wait list is. I believe my apt with Dr Schwartzman's sp? team is this year. I lost my paper work so ill need to call. I haven't decided between his team of drs since hes now gone, or a Dr in DC that's also known to be really good, and of course now this new place.
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