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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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#1 | ||
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Junior Member
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"Thanks for this!" says: | RSD ME (01-11-2015) |
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#2 | ||
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Magnate
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I underwent a radiofrequency neurotomy that might work for some patients with RSD/CRPS but absolutely exacerbated my condition--it was after this procedure that I became sensitive to sound and light, and much more sensitive to touch, vibration, wind, clothing, etc. Several doctors I told that the procedure made me worse, brushed me off. Years later I found a warning on Dr. Hooshmand's website that that procedure should be avoided at all costs. Eventually I found a doctor that was conservative to not cause more harm and aggressive in trying to help me find relief. And I've had to switch docs a few times since then, and that is what I insist on. My injury was a WC injury as well, and I have been dealing with the issues related to it for many, many years. They don't make decisions based on what is in your best interest, but rather what costs them the least amount of money. I have gone out of pocket for both meds and treatment when I clearly should not have needed to, but my health is my first priority. As I wrote earlier, there is absolutely a way to take control of your medical should you wish to, you must make sure that Medicare approves the set aside first (even if you have not yet applied for SSDI.) There are many steps I would take before agree to being a guinea pig and potentially decreasing my quality of life. Going to a pain psychologist to help discuss your options is often a good place to start. Outpatient Ketamine can cost as little as $1000 out of pocket--I would beg, borrow or steal if I couldn't afford it BEFORE amputating an arm. And again, I would amputate in a heart beat if I believed it would work. |
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"Thanks for this!" says: | RSD ME (01-11-2015) |
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#3 | ||
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Senior Member
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the new york hospital for special surgery is looking for people to do a trial ketamine infusion. i believe they pay for treatment but not for hotel stay. maybe you can google them to find out more about this procedure. hope if you try it it helps you. take care.
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RSD ME . |
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"Thanks for this!" says: | LIT LOVE (01-12-2015) |
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Magnate
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https://clinicaltrials.gov/ct2/show/NCT02094352 |
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"Thanks for this!" says: | RSD ME (01-12-2015) |
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#5 | ||
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Senior Member
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wouldn't they accept him if its free. i would think wc would like that. maybe i'm wrong. i don't know much about wc. i just figured the price was right for them. maybe if they knew it was free they would be ok with it. just a thought. maybe you're right. but i don't think it could hurt to ask. thanks for your input though. i learn alot from all of your experiences. thanks to all and i wish you all the best. take care.
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RSD ME . |
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#6 | ||
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"Thanks for this!" says: | RSD ME (01-12-2015) |
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#7 | ||
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Senior Member
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that's a shame. thanks for letting me know this too. i didn't realize.
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RSD ME . |
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Thread | Forum | |||
RSD Above-Knee Amputation Questions! TREATMENT HELP PLEASE! | Reflex Sympathetic Dystrophy (RSD and CRPS) | |||
has anyone been offered amputation | Medications & Treatments |