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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Old 01-10-2015, 04:23 PM #1
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Default need help close to amputation

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.
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Old 01-10-2015, 05:33 PM #2
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We have past postings about possible amputation & CRPS/RSD...

From what I've read, the body might still think there is a hand & still register the RSD pain..

But you can find them with the search link here-
http://neurotalk.psychcentral.com/search.php


Don't let work comp pressure you into trying amputation unless you find you want to do it after reading as much as you can..
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Old 01-10-2015, 05:51 PM #3
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welcome to the group swampcricket. sorry you have rsd. i've had it for four years in Feb. i'm not a dr but will tell what my opinions and experiences are on rsd and amputation.

first off, having surgery done on the initial rsd site can be very dangerous because it can cause more pain and spread. my drs wouldn't do surgery on my wrist after i broke it to reset it because i had developed rsd and they didn't want to cause more pain and spread from rsd. i would check with another ortho surgeon and pm dr who knows what rsd is because if they did, i don't believe they would have done that.

secondly, every dr i've spoken to, including my neurologist, pm dr and ortho surgeon said not to amputate the rsd site. amputation can make the rsd pain worse by spreading and will not help you at all. amputation is bad and not helpful in treating rsd pain. i would check with a neurologist and pm dr to confirm this with you.

it sounds to me like your dr doesn't have enough knowledge on how to treat rsd and can cause you more harm then he may already has by doing surgery on your rsd site and talking about amputating your rsd site. if i were you i would get a few more opinions from qualified rsd drs.

one thing i've learned the hard way from rsd is that not all drs know what it is and how to treat it. and what's worse then that is not all drs will admit to that. some drs egos are bigger then their concern for their patients.

thats not to say they are all like that. there are good and qualified ones out there. you just have to keep searching until you find them. it's a trial and error thing. check out rsd hope and rsdsa on line for possible dr listings. everyone on this forum are also very kind and helpful.

i hope you can find a dr who can get your pain under control soon. i am sending soft hugs and warm thoughts your way. take care.
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Old 01-10-2015, 08:57 PM #4
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There are maybe a few RSD/CRPS specialists in the entire country I would consider listening to with such extreme advice as amputation. If you do have RSD/CRPS the issue is dysfunction of your Central Nervous System.

The advise in the past has always been that amputation is only an option if there is gangrene and no other option. Someone posted a link recently that there was a study that amputation might be a viable option, but there are a whole host of other things I would insist on before ever considering amputation--and there was a point early on when I used to fantasize and dream about amputation as a way to have a normal life again.

And please understand when you are in as bad as shape as you are, it is VERY easy to overlook spread or mirroring to other areas, especially when you factor in opiates that mask lower levels of pain.

Why not insist on an inpatient course of Ketamine? I would even consider a spinal cord stimulator trial long, long before considering amputation!

When you say SGB didn't work, what does this mean? No pain relief? Temp pain relief? Did your eye droop and did your throat get sore?

Have you attempted pt in warm water? If you're unable to move it or use it, it will only get worse. If you can only move it for a few minutes under water, that's a start!
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Old 01-10-2015, 09:25 PM #5
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Quote:
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.
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..
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Old 01-10-2015, 09:25 PM #6
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Quote:
Originally Posted by LIT LOVE View Post
There are maybe a few RSD/CRPS specialists in the entire country I would consider listening to with such extreme advice as amputation. If you do have RSD/CRPS the issue is dysfunction of your Central Nervous System.

The advise in the past has always been that amputation is only an option if there is gangrene and no other option. Someone posted a link recently that there was a study that amputation might be a viable option, but there are a whole host of other things I would insist on before ever considering amputation--and there was a point early on when I used to fantasize and dream about amputation as a way to have a normal life again.

And please understand when you are in as bad as shape as you are, it is VERY easy to overlook spread or mirroring to other areas, especially when you factor in opiates that mask lower levels of pain.

Why not insist on an inpatient course of Ketamine? I would even consider a spinal cord stimulator trial long, long before considering amputation!

When you say SGB didn't work, what does this mean? No pain relief? Temp pain relief? Did your eye droop and did your throat get sore?

Have you attempted pt in warm water? If you're unable to move it or use it, it will only get worse. If you can only move it for a few minutes under water, that's a start!
Blocks had no effect eye did droop and trouble speaking afterward no pain relief.pt with ground up corn cobs and hot air just made things twice as bad .i have been to three pain specialist and they all agree that amputation is the way to go. They want to do a spine stimulator but if I get this I can't ever work as a firefighter again because bwc won't pay to have it repaired if it gets knocked off. I have 6 years to go to retirement. Surgeon says he has done 4 people with CRPS and all have recovered well and no symptoms after amputation . Just wandering if there is any other treatments to try before the amputation. They say I have type 2 but mine is not the hot I have cold crps hand turns purple and cold. It hurts to walk any air movement. I just believe I should take the chance and see I know this sounds bad but its a chance
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Old 01-10-2015, 09:32 PM #7
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Quote:
Originally Posted by Jo*mar View Post
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
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Old 01-10-2015, 10:44 PM #8
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[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
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Old 01-10-2015, 10:45 PM #9
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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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Old 01-10-2015, 11:02 PM #10
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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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