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 03-13-2010, 01:00 PM #1
Big Sky Big Sky is offline
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My son has been diagnosed with RSD/CRPS, the result of an accident at work. We live in Montana and there are no specialized or research centers here in the state. Can someone please direct me to a research center or specialized group for RSD/CRPS in the pacific northwest, thanks?

Al
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AintSoBad (03-13-2010)
Old 03-13-2010, 05:00 PM #2
AintSoBad AintSoBad is offline
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Hello Al,

I don't know of anyone there in particular.
Go to rsdsa.org and they have a doctor finder.

Short of that, shop, as if you're shopping for a specific commodity.
A doctor familiar with and who treats RSD/CRPS.
That would probably fall under Neurologist. Try your hospitals, and call the Chief of Neurology's office first.
(Many doctor's don't like to treat such Chronic conditions, for lack of improvement, and it's frustrating for both the Doctor, and the patient.)

I wish you, Your Son well, but, this is possibly a lifetime job, your best bet is to be very strategic, and looking under every rock for help for your Son!
The earlier this is treated, the better the long term outcome.
BTW, I've had rsd for 26 years, and went undiagnosed for 7.

Get him to SOMEBODY, be it a Neurologist, a Pain management doctor, or, chiropractor that can give him some relief. (I got by those 7 nasty years with a Chiro).
Keep him in the "system", so that these people can always be on the 'lookout' for more and better help!

Pete
asb
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loretta (03-14-2010)
Old 03-13-2010, 05:21 PM #3
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Quote:
Originally Posted by AintSoBad View Post
Hello Al,

I don't know of anyone there in particular.
Go to rsdsa.org and they have a doctor finder.

Short of that, shop, as if you're shopping for a specific commodity.
A doctor familiar with and who treats RSD/CRPS.
That would probably fall under Neurologist. Try your hospitals, and call the Chief of Neurology's office first.
(Many doctor's don't like to treat such Chronic conditions, for lack of improvement, and it's frustrating for both the Doctor, and the patient.)

I wish you, Your Son well, but, this is possibly a lifetime job, your best bet is to be very strategic, and looking under every rock for help for your Son!
The earlier this is treated, the better the long term outcome.
BTW, I've had rsd for 26 years, and went undiagnosed for 7.

Get him to SOMEBODY, be it a Neurologist, a Pain management doctor, or, chiropractor that can give him some relief. (I got by those 7 nasty years with a Chiro).
Keep him in the "system", so that these people can always be on the 'lookout' for more and better help!

Pete
asb
I am so sorry for your son's diagnosis and for you too... This is such a desvestating disorder and you have our support at all times..don't leave our side here..This is a wonderful forum... educational and supportive... as far as finding a treating physician..how about a recommendation from your previous Dr. ?? Or as Pete said log into the RSD.org site..much information there..I see a Pain management Dr. but a neurologisit is good also.. We have our hands full living and working with this illness it can be a scary run but not with us by your side... Do your homework and don't stop until you feel comfortable..then read some more!!

Let us know what we can do for you on here~!!!!

Hugz, kathy
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Old 03-13-2010, 06:20 PM #4
edever34 edever34 is offline
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Please contact RSD.org. They can help,but do it right away,the next 6 months are crucial-Fondly-Carol
Also see if there is a Support Group listed at RSD in your area!!!!

Last edited by edever34; 03-13-2010 at 06:21 PM. Reason: added comment
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Old 03-14-2010, 11:19 AM #5
Big Sky Big Sky is offline
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Quote:
Originally Posted by keep smilin View Post
I am so sorry for your son's diagnosis and for you too... This is such a desvestating disorder and you have our support at all times..don't leave our side here..This is a wonderful forum... educational and supportive... as far as finding a treating physician..how about a recommendation from your previous Dr. ?? Or as Pete said log into the RSD.org site..much information there..I see a Pain management Dr. but a neurologisit is good also.. We have our hands full living and working with this illness it can be a scary run but not with us by your side... Do your homework and don't stop until you feel comfortable..then read some more!!

Let us know what we can do for you on here~!!!!

Hugz, kathy
Thanks for the support, we'll both need it! I'm sure I'm not relaying anything all of you folks haven't experienced but it's VERY FRUSTRATING, mentally taxing for myself and son, not to mention the chronic pain he's dealing with.
Again, thanks.

Al
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Old 03-14-2010, 11:11 AM #6
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Quote:
Originally Posted by AintSoBad View Post
Hello Al,

I don't know of anyone there in particular.
Go to rsdsa.org and they have a doctor finder.

Short of that, shop, as if you're shopping for a specific commodity.
A doctor familiar with and who treats RSD/CRPS.
That would probably fall under Neurologist. Try your hospitals, and call the Chief of Neurology's office first.
(Many doctor's don't like to treat such Chronic conditions, for lack of improvement, and it's frustrating for both the Doctor, and the patient.)

I wish you, Your Son well, but, this is possibly a lifetime job, your best bet is to be very strategic, and looking under every rock for help for your Son!
The earlier this is treated, the better the long term outcome.
BTW, I've had rsd for 26 years, and went undiagnosed for 7.

Get him to SOMEBODY, be it a Neurologist, a Pain management doctor, or, chiropractor that can give him some relief. (I got by those 7 nasty years with a Chiro).
Keep him in the "system", so that these people can always be on the 'lookout' for more and better help!

Pete
asb
Thanks for what you provided.
Because this matter is work related (Workmen's Comp) it has been a real struggle (last 1½ yrs.) I can see a legal battle brewing, thanks again.

Al
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Old 03-13-2010, 06:55 PM #7
SandyRI SandyRI is offline
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Do you live near Wyoming?

Jim Broatch of the RSDSA provides a list of ketamine providers. On the list is the following doctor in Casper, Wyoming:

Tuenis Zondag Neuroscience Center 307-265-7246

If that doesn't work for you, I also see the following doctor in Salt Lake City, Utah:

Andrew Tallbutt Life Tree Pain Clinic 801-261-4988


The best of luck to you both. XOXOX Sandy



Quote:
Originally Posted by Big Sky View Post
My son has been diagnosed with RSD/CRPS, the result of an accident at work. We live in Montana and there are no specialized or research centers here in the state. Can someone please direct me to a research center or specialized group for RSD/CRPS in the pacific northwest, thanks?

Al
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AintSoBad (03-13-2010), loretta (03-14-2010)
Old 03-13-2010, 11:40 PM #8
debbiehub debbiehub is offline
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How old is your son? Young people have a better chance of getting out of this mess if they do the right course of tx,,,,,

Debbie
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loretta (03-14-2010)
Old 03-14-2010, 11:30 AM #9
Big Sky Big Sky is offline
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Quote:
Originally Posted by debbiehub View Post
How old is your son? Young people have a better chance of getting out of this mess if they do the right course of tx,,,,,

Debbie
He's 34, I have read since yesterday and was surprised to see how many children and how a little accident can bring the onset of this hidious disorder.


Al
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Old 03-14-2010, 11:23 AM #10
Big Sky Big Sky is offline
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Quote:
Originally Posted by SandyRI View Post
Do you live near Wyoming?

Jim Broatch of the RSDSA provides a list of ketamine providers. On the list is the following doctor in Casper, Wyoming:

Tuenis Zondag Neuroscience Center 307-265-7246

If that doesn't work for you, I also see the following doctor in Salt Lake City, Utah:

Andrew Tallbutt Life Tree Pain Clinic 801-261-4988


The best of luck to you both. XOXOX Sandy
Thanks for the info. Have you heard of a Dr. Shane Brogan at the University of Utah?

Al
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