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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)

need help close to amputation

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Old 01-13-2015, 11:43 AM   #21
Barb117
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Default Do not allow amputation

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Originally Posted by swampcricket View Post
In 2013 I had a accident at the firehouse little finger on left hand got smashed by a trailer tendons ruptured and nerves severed.went to surgery to fix. The surgeon was not able to repair had to amputate finger. Three weeks later I get this pain in hand and it turns purple with constant shocks and swelling along with a cold felling in hand and cramps. Doctor says CRPS but bwc don't believe him. Fast forward 6 months still no treatment pain specialist says CRPS he gets ganglion nerve block approved I get 3 of them no relief. Fast forward another 6 months on gabapentin 3000mg day baclofen 20mg a day and nortriptyline 50 mg a day and lidocaine patches hydrocodone 5-325 for pain 2 more nerve blocks no relief. In September they do surgery to implant nerves in hand in bone and muscle of hand. No relief see surgeon 2 days ago.my hand is in a fixed position can barley open fingers hand is swollen so much its 2 times normal size. Surgeon says there is nothing more they can do x rays show osteoporosis in hand EMG shows nerve delay in hand.Surgeon wants to amputate left hand he says CRPS is spreading up hand and wants to amputate at the wrist so it don't spread up arm. Is there any more treatments I can do so they don't amputate my hand. Any help will be appreciated thanks for taking the time to read this.

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
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Old 01-13-2015, 02:28 PM   #22
LIT LOVE
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Quote:
Originally Posted by Barb117 View Post
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/
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Old 01-13-2015, 06:11 PM   #23
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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
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Old 01-17-2015, 05:12 PM   #24
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Originally Posted by swampcricket View Post
In 2013 I had a accident at the firehouse little finger on left hand got smashed by a trailer tendons ruptured and nerves severed.went to surgery to fix. The surgeon was not able to repair had to amputate finger. Three weeks later I get this pain in hand and it turns purple with constant shocks and swelling along with a cold felling in hand and cramps. Doctor says CRPS but bwc don't believe him. Fast forward 6 months still no treatment pain specialist says CRPS he gets ganglion nerve block approved I get 3 of them no relief. Fast forward another 6 months on gabapentin 3000mg day baclofen 20mg a day and nortriptyline 50 mg a day and lidocaine patches hydrocodone 5-325 for pain 2 more nerve blocks no relief. In September they do surgery to implant nerves in hand in bone and muscle of hand. No relief see surgeon 2 days ago.my hand is in a fixed position can barley open fingers hand is swollen so much its 2 times normal size. Surgeon says there is nothing more they can do x rays show osteoporosis in hand EMG shows nerve delay in hand.Surgeon wants to amputate left hand he says CRPS is spreading up hand and wants to amputate at the wrist so it don't spread up arm. Is there any more treatments I can do so they don't amputate my hand. Any help will be appreciated thanks for taking the time to read this.

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
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Old 01-21-2015, 05:14 AM   #25
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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.
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Old 06-07-2018, 12:19 PM   #26
swampcricket
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Default update on amputation of left hand

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.

Last edited by swampcricket; 06-07-2018 at 12:41 PM.
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Old 06-13-2018, 07:13 AM   #27
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Quote:
Originally Posted by swampcricket View Post
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.
Wow 2 years since an amputation and you're off your medication and doing fine. That's amazing to hear.

I know someone else who has had an amputation (legs) and is in terrible pain all the time; goes to show it's different for everyone.

Good luck.

Not everyone would just let their hand be amputated due to RSD. It's often a long shot.
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 06-14-2018, 08:03 PM   #28
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Quote:
Originally Posted by swampcricket View Post
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.

Was this surgeon a specialist in RSD/CRPS, and these a some new techniques to head off any issues going forward?

If you would like to, please make a new thread and tell more about this for members reading and for future members...
If this is is some new treatment option that hasn't been posted about here yet, we'd like to have the information available..
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Old 06-17-2018, 05:00 AM   #29
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Originally Posted by Jo*mar View Post
Was this surgeon a specialist in RSD/CRPS, and these a some new techniques to head off any issues going forward?

If you would like to, please make a new thread and tell more about this for members reading and for future members...
If this is is some new treatment option that hasn't been posted about here yet, we'd like to have the information available..
Yes it sounds very interesting, and might be worth considering for those in pain that can't be otherwise resolved (by conventional means like medication or stimulators).

I do still think amputation is a long shot, my personal 2cts, but some techniques differ from others and OP is the living example of something gone *right*.
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All the best, Marleen
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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