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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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01-10-2015, 10:45 PM | #1 | ||
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Magnate
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I would certainly try Ketamine before considering amputation. And understand my concern is NOT you living with one hand. Without spread you would be WAY more functional. But what if all the issues in your hand spread to your internal organs? to your face? to your back? Don't imagine that things can't get worse, because they can. If you can only get approved for outpatient Ketamine or have to go out of pocket it would be worth paying for.
And I've had MANY Stellate Ganglion Blocks over the years and the doc's technique can make a HUGE difference. I would suggest trying with a second doc. You should not be making your decisions based on WC. Do you have an attorney? If you are age 50 or older, you probably would have a relatively easy time getting approved for SSDI. SS would have to approve your medical set aside for WC should you decide to settle your case and not keep your medical open. At the point your medical funds were exhausted, then you'd be covered by Medicare. Medicare is approving Ketamine now--WC does if you fight hard enough in some states as well. |
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01-10-2015, 11:02 PM | #2 | ||
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Magnate
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You have not had an adequate pt trial btw. You may need to go to a different therapist. They tried desensitization techniques, which they should work up to in a situation like yours.
If you have not tried swimming in warm water, I would absolutely start there. (Calm warm ocean water is even better.) It works well for many of us. A few dislike it but it's a good place to start. |
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"Thanks for this!" says: | bunnehead (01-13-2015) |
01-10-2015, 11:09 PM | #3 | |||
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Always get second /third (independent) opinions too, don't only go with what this same? original surgeon says..
Even if you have to send your medical files to a RSD expert - by mail or even scan & email them asking for opinions?? I don't know if this forum has a compiled listing of good RSD/CRPS doctors and PTs too?? If not that would be a good thread for members to build , we could eventually add it to the sticky threads..
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"Thanks for this!" says: | RSD ME (01-11-2015) |
01-10-2015, 11:30 PM | #4 | ||
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Magnate
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Dr. Schwartzman was the "big gun" for many years, but is retiring or has retired at this point--the OP could likely get a referral from his office still. Or perhaps Dr. Getson? The Northeast seems to have the best docs. |
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01-11-2015, 06:58 PM | #5 | ||
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"Thanks for this!" says: | RSD ME (01-11-2015) |
01-11-2015, 08:49 PM | #6 | ||
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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) |
01-11-2015, 09:59 PM | #7 | ||
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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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"Thanks for this!" says: | LIT LOVE (01-12-2015) |
01-12-2015, 12:25 AM | #8 | ||
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Magnate
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Quote:
https://clinicaltrials.gov/ct2/show/NCT02094352 |
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"Thanks for this!" says: | RSD ME (01-12-2015) |
01-12-2015, 02:43 AM | #9 | ||
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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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01-12-2015, 09:35 AM | #10 | ||
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Magnate
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"Thanks for this!" says: | RSD ME (01-12-2015) |
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