Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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  • #5210
    macgoo
    Participant

    As most of you know Victoria has just gone through amputation of her second leg. Alot for any person to go through.

    I recently had a medical report compiled that mentioned amputation. It stated that up until now amputation had been contra indicated as a form of treatment in crps unless absolutely required on medical grounds, but that new evidence was emerging to say that in some cases amputation is being found to be beneficial.

    Just wondering on what everyone’s thoughts are on amputation as a form of treatment for crps and if it’s something many of you have considered? I know I certainly have, and indeed have begged my Dr at times when pain is really high!

    #5261
    Sadie
    Spectator

    Hi Macgoo!

    My name is Sadie, I’m 27 and I had a right below the knee amputation done 6 months ago. The short version of a very long story is I was born with talipes, had many many surgeries growing up, at 17 I moved to Sheffield and they planned 3 fusion surgeries. I had the first surgery and developed CRPS, they immediately stopped the treatment of the talipes and started treating the CRPS. I was never able to get off my crutches from this point and added a wheelchair to the mix at 23. I became treatment resistant very quickly, had a spinal cord stimulator implanted, fell and dislodged the wires – had to have electrodes implanted, became bed bound, added methadone (didn’t get on with that) and ketamine to the mix and then December 2013 the pain amplified and after another lot of x-rays showed that the CRPS had impacted the bone density and was buckling under all the plates/ screws etc…that was holding my talipes repair together. I decided to ask for an amputation, saw orthopaedics in April and they referred me to the limb reconstruction surgeon, saw him July and I was amputated 19/8/14.

    My experience has been very positive. For the surgery a number of safeguards* were put in to try limit the CRPS spreading to the stump, a ketamine infusion during surgery, a 9 day epidural post surgery and a cast post surgery to protect the stump from the knee bending and to stop any infection risks (hands of nurses etc) getting to the wound. Also I was kept on the same medication routine I was on and they added on top for any pain relief. After the epidural was out there was already an incredible improvement, no bone pain – I hadn’t realised how much that was adding to the agony beforehand, and the sensation was normal. No CRPS. I knew before that I would be eliminating one source of pain, but I had no idea how the CRPS would respond and admittedly, after 10 years of being treatment resistant, I had not expected no pain. Pretty much immediately my life improved, I was able to come off the ketamine and morphine within 2 weeks, I was able to manage physio, I was awake, was a big change.

    I learnt to walk on the PPam aid and because I have always walked weird due to the talipes, we began trying to strengthen and straighten my muscles so that when I got my prosthetic I would be in a better position to use it. I was fitted at the beginning of November and got to try it and take it home on the 19th November (normally there is a 2 week wait whilst you get used to it but they were confident I was safe). Since then it has been hard but I’m getting there, now crutch free inside and only 1 walking stick outside. Hoping to return to work next month, attending the gym, learning to swim, only on a minuscule dosage of gabapentin to keep the phantom pain at bay, I feel like a different person. So nice to see a future instead of what I saw this time last year.

    For me I know they agreed to the amputation because of the underlying talipes issues but based on my experience, it has been the best treatment decision I have ever made. I think it is contra indicated because people who did not have the same improvement of CRPS symptoms were then left in the same pain but facing the difficulties of being an amputee and there were more people that amputation didn’t help than it helped. I think if people are going to chose it as a treatment, they need to have weighed up all the consequences, I worked with my counsellor prior to the surgery and was very prepared to live as an amputee but with CRPS too, I think you need to be fully able to accept the consequences of your decision should things not work out, you also need to be prepared for the grief that hits you post amputation. I think if it is a treatment option you need to be cleared by a counsellor that you have accepted these things in order to be cleared for the procedure.

    I have tonnes more to say/ could say but before this turns into an essay, do you have any specific questions you would like me to answer?

    *safeguards were put in place by limb reconstruction surgeon who has done a number of amputations on CRPS patients, and based on his specific experiences as to what worked best. Following his system being implemented he has done 11 amputations, 9 leg and 2 arms, 8 have been very successful, 1 (arm) has had some improvement in her CRPS symptoms and there has been no further spread, able to wear a prosthetic some of the time, and 2 patients had the same CRPS pain as before but their underlying bone pain had gone which meant they felt better overall.

    #5712
    satonmybutt
    Participant

    I have on many occasions asked and begged several consultants to amputate my leg, the answers are always no because they say they have taken an oath to cause no harm and by doing amputation they would be causing harm.
    I did threaten to take it off myself with a circular saw, I said it to make them realise how serious I was, however I had to back down as they were talking about psychiatric help.
    I would love to know about this report so I can show my consultant.

    #5722
    Sadie
    Spectator

    Hey satonmybutt,

    I think it is a very fine line for consultants, my friend in America is on his 63rd doctor total and 20th specifically pursuing amputation – he was hit by a car and the bones in his leg are screwed together with so much metal it is a wonder they didn’t amputate in the beginning – but now his bone density is being affected by the CRPS, much like mine, crumbling around the metalwork that amputation is his only option – he has been turned down so many times because if it doesnt work out, they don’t want sued, even with clear physical evidence in the bones and all of them saying it is medically necessary none of them will take on the risk of the CRPS.

    There are many people, who have a medically necessary amputation – Victoria for example – but receive absolutely no relief from CRPS symptoms – those of us that do seem to be very few and far between. There isn’t an exact science, in many ways it seems to be luck of the draw. As you probably know even medications are widely disagreed upon between doctors and not everyone responds the same way, so when you are lopping off a limb but with absolutely no guarantee that it would do anything you can at least understand why it is contra indicated. Plus you also then have 95% of amputees suffering with phantom pain, and those that seem to suffer with chronic pain to begin with tend to experience it as pain as opposed to phantom sensations. Even phantom sensations can stop your ability to wear a prosthetic, let alone still suffering with the CRPS.

    To be able to chose amputation, if you have a consultant willing to do it, you do have to prove you are of sound mind and that you have considered absolutely every possible outcome there is, how you will cope with certain situations should they arise, work on those coping skills etc etc etc and so if amputation is 100% the route you want to pursue then getting a head start in counselling is a good place to start. I work in mental health and even through me attending sessions, I learnt so much that helped me leading up to my surgery. Psychiatric help isn’t the end of the world.

    I will also just take a second to say here that even though I am extremely pleased with the results of my amputation, living with 1 leg is tough, everything is so much more hard work, and the amount of energy you use wearing a prosthetic is something I didn’t quite anticipate – you don’t really know how much 40% is until it takes you 40% more energy to walk a short distance. Also, guessing from your picture that you aren’t a girl, but for girls who haven’t yet hit the menopause, there is a monthly visitor that impacts prosthetic wearing that no one warned me about!

    Only you know what is the right treatment plan for you, but DO NOT take a circular saw to your leg!!!!!!!! EVER! My surgeon took 3 hours, 10 minutes cutting through the bone, the rest of the time shaping it so I could wear a prosthetic comfortably, tying off nerves, collecting calf muscle to stitch onto the bone for padding underneath – I am sincerely hoping you were just trying to show how serious you were and that you have in no way plans to do anything, but seriously until you meet a limb reconstruction surgeon, you don’t know how much work goes into construction a good, functioning stump, you have to cut nerves in such a specific way to stop them retracting into your body, all it takes is for 1 nerve to be damaged and you are stuck in the chair full time because you can’t bear to wear a prosthetic. DON’T DO IT!

    #5734
    satonmybutt
    Participant

    Thanks Sadie, yes I was just trying to show the consultant how desperate I am.
    I have looked into it in detail, I watched a video of anamputation and saw them attach sutures to various muscles, nerves and arteries so that they could be placed in the right position during reconstruction. It was a hard watch but amputation is hard and so I thought I should know everything.
    Being in a chair doesn’t actually affect me as much as I thought it would, being in pain is what bothers me.
    I struggle also because the replacement knee clonks and everytime it does clonk, its like a live wire touching metal but my consultant won’t listen and says I’m talking nonsense because a false knee can’t hurt!

    Unfortunately since writing the original post, I have damaged my right knee and have made a good job of it. My family want me to attend A&E but it’s the last place I want to be on a bank holiday weekend and so I will wait and go on Tuesday. Its the last thing I needed, the doc won’t amputate now the other leg has gone, but I guess that’s life.

    Thank you for the reply, as you know it’s mentally hard work and I was hoping that if a consultant did agree, then it might help, even if it’s just to get a very long leg that plays up out of the way. The bend in a replacement knee isn’t great and it causes problems and I’m starting to get to the point where I despise the metal components and just want to tear them out.

    #6458
    lekartacayen
    Participant

    Hi, I might be a little late to this discussion so maybe you won’t see this…

    Sadie, I just wondered if I could ask you a few questions? Either here or in private. I’m in the same kind of situation as StayOnMyButt. I’m in the UK and none of my doctors take me seriously when I talk to them about amputation.

    After months of bringing it up with my consultant he finally said ‘Yes, it is an option. But only as a last resort. We will try everything else first.’

    My worry with this is that my CRPS will keep spreading up my leg (it originated in just my left foot and ankle but has now started spreading up slowly). If I do end up having to have my leg removed I’d obviously like to be able to keep as much of it as possible. But if it keeps spreading up, over the next however long, then that will be more and more that has to be taken.

    This doesn’t seem to be a valid worry apparently though.

    My pain is getting worse and worse this year, after reading stories like yours though I do realise that my pain is basically nothing in comparison. I’m still walking, with crutches, and there are actually still those rare and beautiful fleeting moments when there is almost no pain at all. This year though the pain had returned alarmingly quickly. I have been having IV Lidocaine for the last year and it was working well up until January. Now nothing seems to be working and it really feels like my pain consultant just no longer cares and is bored by my case. He says the next thing to try is the spinal cord stimulator (and apparently there’s one other thing he wants to try but hasn’t told me what as yet, so secretive!).

    Gosh it’s easy to waffle on on these things hey! You don’t realise there’s so much to say until it all starts coming out of your finger tips onto the keyboard!

    Hope I haven’t bored you all too much!

    Look forward to hearing from you.

    #6675
    burningpain
    Participant

    my dr has told me that amputation does not help alleviate rsd pain but that was five years ago. maybe things have changed since then. in either case, i hope it has helped victoria and am sending healing thoughts and prayers her way.

    #6729
    Sadie
    Spectator

    Hi there,

    Sorry I am so late in getting back to you. I think it is really tough to get any pain management to agree to amputate unless there is physical proof like bone ddensity issues, skin breakdown etc. It isn’t classed as a CRPS treatment just because the results vary so so much.

    I am a trustee of Burning Nights and so you can actually read my full story on the donations page but in short it was orthopaedics who agreed to amputate. I was born with club foot so the CRPS had impacted that. I too was beginning to experience spread and basically for below knee you need 1 inch for every foot tall you are so 5 foot = 5 inches below knee. So ideally if this is what you want to pursue, the sooner the better. Orthopaedics were fantastic.

    This is my experience with an SCS, I don’t want to put you off by any means because I do know people who really had great results but I always think it is best to hear the good and the bad when making an important decision.

    I had a SCS in 2009 and it was great for 5 days, they implanted permanent system, great another 3 days then i fell in the hospital bathroom and the leads slipped and it stopped working, I had to wait 7 months for them to then put electrodes in and because they are so much thicker they ache/d constantly…6 months later the stimulator stopped having any impact unless I used it 1 day, turned off for 2 and it went from 65% effective to maybe 10%. I had a ketamine infusion and was then prescribed oral ketamine and I wish i had had that first as i never would have had the SCS, it gave me 3 very stable years until there were complications from my club foot and CRPS and I became bed bound and had my leg amputated (which other than the ketamine has been the best treatment for me). They left the stimulator in to see if it would help with phantom limb pain but I didn’t have any other than directly after surgery, they think 10 years of CRPS disconnected my brain from my leg and that is why. So when i didn’t need the SCS for definite I decided to have it removed because of the constant back pain, was supposed to be in 1 day out the next, off 1-2 weeks, it was 15 weeks off and they are unable to remove 2 electrodes because it is too dangerous, my spinal column has narrowed severely where the stimulator is and they had to widen it because if it had closed any more i would have been left paralysed below the waist and i worked too hard to get back up on my feet post amputation for that. I have to have a review at the end of September and possibly 2 more surgeries to ensure I don’t end up paralysed. For me the 6 months it worked wasn’t worth it, just another source of pain, that is especially bad in the cold. Also the battery pack was moved a few times because I lost 3 stone and it would flip in my stomach (luckily under local). I do have some cracking scars now, one that goes from top of bra strap nearly to my bum crack (my boyfriend says it makes me look like i have the longest bum crack in the world) 2 from the lead insertion site and 3 battery pack ones!!!!

    As I said i don’t want to put you off, there are people who have incredible and long lasting results. Get a page of paper and write down every thought you have about SCS over the next week, at the end highlight the positive ones and count them up – easier than sitting and thinking pro and con and you tend to get stuff you wouldn’t have thought of just writing a pro/con list.

    Have you tried the ketamine infusion if the IV you were having is no longer working?

    Good luck with whatever you decide and I am more than happy to talk/ answer more specific questions if you want xx

    #6730
    Sadie
    Spectator

    Hi burningpain,

    Amputation definitely relieved my CRPS symptoms in my leg. I had had nerve conduction studies and the affected nerve was in my ankle (close to a club foot surgery site). I do a still have CRPS present in my face and ears but the severity of that in comparison with my leg is absolutely nothing and that spreading/ jump had happened prior to the amputation. I am so glad every day that I did it. I can understand why Dr’s don’t recommend it because the results vary so much and being an amputee is so much harder, but I do think for some patients it is the right course of action! I was told for Years it wasn’t an option.

    I hope you are doing ok, best wishes xx

    #6731
    burningpain
    Participant

    hi sadie. thanks for the info on amputation. its always good to know there are other options out there to help relieve rsd pain. i appreciate the info on it. i never knew it could be used to help rsd. thanks again for the info. hope you all have a low to no pain day. soft hugs.

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