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..

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.

Hello;
I have had RSD for over 30 yrs. PLEASE DO NOT let them amputate,it will cause RSD to go right up your arm. SEE . ** for more info.
I am having a second 5 day,out-patient Ketamine infusion at Cleveland Clinic next Monday. I had it last year and it helped a lot. Also read up on this medicine,it is calledLow Dose Naltrexone. Info can be found at **

Hope this helps. Prayers for healing !!!

Barb117

Here's a good link on the low dose naltrexone! Your link was probably not allowed yet?

http://painsandiego.com/2014/02/15/l...-chronic-pain/

Went to the mailbox today and the response to the ketamine treatment was in there and the answer was once again denied. So it looks like that's not going to happen anytime soon. One good note for the day was the Dr gave me a wrist block and I am on cloud nine for at least the next 6 hours. I see my physician of record on the 23 to see what the next game plan is. I will keep all of you informed. Thanks for all the replies and all the ideas

Hey Swampcricket,

Wow, I'm dealing with a crush injury of my middle finger on right (dominant) hand that occurred in April of 2011. The bones in my finger never healed so it was referred to as a non-union. From the beginning I had severed nerves and the hot searing pain. I went through hours upon hours of painful occupational therapy and many different splints. I wound up with a trigger of my small finger from overuse of it. I had a neurolysis done and a trigger repair and more OT. The middle, ring and small fingers of my right hand began to "claw" and curl under. Had CRPS symptoms throughout this entire time. Finally had my large finger amputated down to the PIP joint. That is when I opened Pandora's Box. I wish I never ever had the partial amputation because now I have CRPS Stage II and my nerves are screaming angry with me.

Throughout this journey, I've declined all pain meds unless I was on night #8 of no sleep. At that point I take a half a percocet or flexeril just to reboot my brain and get a few hours of good sleep so I can function. For pain relief, I have always requested nerve blocks directly in my hand, but they are so very painful and only last a day at best.

Fast forward....the pain is accelerated and unbearable so I started to really complain to my orthopaedist and was referred to doctor #10 or so. She began giving my Stellate Ganglion Blocks and I get relief for a week or so I don't stop moving unless I have to! It's great. I sleep the night, wake up feeling rested and feel normal again. This lasts about a week. Then the pain starts to creep back in again and I am at pain level 8 again. I just received Block #8 and am begging WC to keep approving them. Let's see, the implanted tens unit has been suggested as well as Ketamine infusions.

My question to you is, have you seen a pain specialist? I've heard good things about being injected in the hand with Botox, of course you are sedated, and the pain being at bay for 3 months at a time. I also heard good things about Ketamine infusions.

I have been in favor of a Ray Amputation of my middle finger for some time now but now my doctor is leery of performing because of neuroma formations of which I have two in what's remaining of my middle finger and must wear always use a splint. The Stellate Ganglion Blocks help with the CRPS pain, but the neuroma pain has never left my hand.

Please before you agree to any other amputation, please do your due diligence and research your options. Once they start hacking off body parts, that's it! Do you live near any teaching hospital?

Whatever you decide, I wish you the best of luck. Please keep us posted.

Be well!

Cathy

I used to beg my doctors to cut my entire right leg off. About every 3 months I would sit there and cry and beg....so much so that the doctors would be in tears.

Finally I was told by the top neuro doc, and my family doc that it will not help. But would probably increase how fast it is spreading into my auto nervous system.

Plus the phantom pain would likely be there, and be just like if you had the hand still there. I think I would get several opinions before doing anything radical, and this coming from the guy that begged for it.

Once I learned the risks, and that most likely the pain wouldnt end at all. It didnt make sense to lose the body part.

its been awhile since i last posted. so here is an update on on the amputation. On May 24th 2016 i had my hand amputated they did a trans radial amputation. While in surgery they put a prosthetic hand attached to my cast to help with the way the brain thinks. i wore this for about two weeks i was able to operate it with my shoulder the hand would only open and close at this point. Also during surgery they did TMR (targeted muscle regeneration). I spent 6 months in therapy. I stopped all my medications at the end of the two weeks when the cast was removed. i was placed in another cast without a hand on it for two more weeks. I was fitted for a prosthetic at this time. now it has been just two years since the amputation i'm completely off all medications and have no problems with the RSD. i have had phantom pain occasionally in the area where my pinky was but this has only happened a few times. i seen my hand surgeon every three months to make sure everything is going good, now i see him every 6 months. that will drop to once a year in December. I would say that i'm 90% percent back to normal. I use my prosthetic everyday with out problem. I know a lot of people are against amputation but it helped me. this is the best i have felt in the last 5 years since i was diagnosed with RSD. if anyone would like to discuss this any further please let me know.