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.

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..

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.

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!

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..

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

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

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.

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.

Do not allow amputation
 

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.

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.

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.

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*.

I'd give up my hand in a moment for relief.

I've been warned that amputation usually makes it worse and no surgeon will touch it. For a long time doing it myself was "plan B". Sometimes it is completely successful so it always seemed to be an option.

I'm pleased it worked for you and you seem to have had a very successful surgery.

I personally don't think I could. I went through all stages (almost 3 years before diagnosis & treatment) and am in excruciating pain were it not for the medication. During those 3 years I didn't get anything for pain relief.

My "pain plan" was only established 2004. And I have this since 1995! So you can imagine. At the time it was also far more important to treat and see what possibly still could be done (nothing unfortunately).

I never *ever* thought of amputation. Yes, I wanted to get rid of the pain, but... never my limbs. Odd how that is different for everybody!

It is a controversial topic, IMMHO. Everyone does what's right for him / her, there is no right or wrong way to go about this.

We are all so different!

Good luck to OP!