I assume bwc - means a work comp claim??

That makes getting treatment much trickier as they have to approve almost anything suggested by your dr, and usually will try to deny quite often..

Yes workmans comp and treatment is delayed and denied twice before approved they won't let me get the cream dr wants me to use because of to many ingredients so the doctor takes out one ingredient they denied it again because its 600 dollars a month prescription this is what I deal with everyday it took them a year to approve the crps . If they would have approved earlier I may have had a chance with it

[Surgeon says he has done 4 people with CRPS and all have recovered well and no symptoms after amputation .]

I'd ask for many more details about that and/or if you can talk to those people.
And if that is true many others w/ RSD/CRPS would be interested to learn about the details too.

Is this surgeon , chosen by you or a work comp choice?
IF a wc choice I wouldn't believe too much..
They want to do X and hope it gets you off their payroll..but if it makes you worse who will take care of that, they can say we tried X but it didn't work out..

Do you have a comp atty on your side, do they understand about RSD/CRPS?
Most likely is a life long condition and may spread later on..

You might do some reading on our SSDI forum, the sticky threads especially - getting signed up for that now might be an option too.. getting ducks in a row so the speak.. for your future..
http://neurotalk.psychcentral.com/forum28.html

swamcricket, my husband hurt his knee and workmen comp tried the cheapest way possible to fix it which caused more tearing in his knee before they a non workmens comp dr finally said he needed surgery. even then they didn't have his meds ready after surgery. they don't make things easy and try to cut corners.

in my husbands case luckily, his knee could still be repaired by surgery and the tear was fixed. if you have your rsd site amputated and it doesn't work and spreads, they cannot fix it. they can't put your limb back on.

i have NEVER read or heard of any dr who treats rsd say that amputation was a way of treating it. in fact, everything my drs have told me and everything i've read has said the opposite. Amputation will not take away your rsd pain and will only make it worse by spreading to other parts of your body.

surgery especially in the rsd site is one of the worst things a dr can do. It is NOT a treatment of rsd. If i were you i would find a dr or maybe more then one that who knows what rsd is i.e. a neurologist and pain management dr and read sites online like rsdsa and rsd hope and Dr. Hooshmands articles online about amputation and rsd. they are all against it.

dr. schwartmann is an excellent rsd dr too. check him out online as well. i think he works in PA. Dr. Hooshmand worked in FL but is now retired.

i am not a dr but even everyone i've spoken to here have said the same thing. we all believe that AMPUTATION IS ONLY GOING TO MAKE RSD WORSE BY SPREADING.

don't believe everything your drs tell you, especially if they are from wc. i hope you can find a dr who can treat your rsd properly.

take care my friend and please don't do anything without talking to other drs who know rsd is. i don't think consultations from other drs cost much if anything at all. and remember to make sure they are not from wc. also get a copy of their report their opinions after your visits.

soft hugs.

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.

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.

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..

http://www.rsds.org/resources.html Is probably a good place to start for referrals and info.

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.

Dr put in for ketamine times two both were denied we are in the appeal process now but that can take up to three more months. I'm just throwing this out there and don't want to offend anybody but if you have just a chance and its a small chance that amputation could give you pain free why not try. I'm just at the end of my rope I'm tired of being in pain and need relief and if amputation can give you that why not try. They did a study in England I believe where there was 30 people that had amputation 16 were pain free afterwards with no recurrence of rsd . I'm looking at it as a 50/50 chance and the way I have felt over the last 6 months I may just take the chance.I'm not saying its right or wrong but it is a chance. I have also read that it didn't work at all. Don't get me wrong I want to try anything possible before amputation but when the surgeon brought it up I actually felt there could be relief quicker then waiting for bwc to approve treatment. I apologize for rambling on I just needed to vent.

When you're desperate, you're often willing to take chances that you would never consider if you were a more stable mindset. Many of us have been through procedures by doctors we thought were trustworthy and had excellent reputations that have made us worse, not better.

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.