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.

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.

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.

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.

Due to his WC case they won't accept him unfortunately. Those in the NY area should consider it if they can't get approval from their insurance though.

https://clinicaltrials.gov/ct2/show/NCT02094352

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.

The rules of the trial won't allow for WC involvement.

that's a shame. thanks for letting me know this too. i didn't realize.