I’m Stumped – CRPS Amputation Update from Hannah Moore

Firstly, I would like to thank CRPS UK for their continuing support through my journey with CRPS. The support from members and co-founders of CRPS UK has been amazing.

I wrote for the CRPS UK blog a while ago now about my struggle and battle with CRPS but in case you didn’t see it I will update you. In 2012 I had a very minor procedure to remove an ingrown toenail. First I had it done on my left foot, which went fine and then about a month later I had the same procedure done but on the right foot. It did not go well and I was later told that I had developed a condition called Complex Regional Pain Syndrome (CRPS). For approximately the first two years after diagnosis, I tried to continue my life as I had planned and this included going off to college to study a Specialised Chefs’ Scholarship at Poole and Bournemouth College. As part of this, I moved to London to work at a 5* hotel called Corinthia which was situated in Whitehall. However, about a year into my course, my world came crashing down when my CRPS got a lot worse and I started to develop severe ulceration on my affected right foot. I had to stop and had a couple of operations and spent about 3 months in hospital whilst they tried to fix my foot. Eventually in December 2014 my foot had healed and I went back to college in January 2015. I thought this was the end of my ulcers but just 2 months later my foot broke down and this time the ulcers were a lot worse. From March 2015 – June 2016 I had to have my leg and foot dressed and in plaster cast but because of the pain this meant the only way they could do this was under general anaesthetic. During this period of time I had 53 general anaesthetics in just 68 weeks which was an absolute nightmare and enough was enough. Also during this time, my foot got infected several times and a few times it got pretty serious.

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I had been researching and asking for an amputation since February 2015 but for a very long time, but my plea seemed to fall on deaf ears for a very long time. However, after everything that I had been through in the last 3 years I soon realised that this was my only option. Amputation is not recommended as a treatment for CRPS because the CRPS can just return in the stump or spread to another part of the body. I felt that this was a risk worth taking for me because my quality of life had got so bad and all of the general anaesthetics were having a negative effect on my overall health, making me more unwell. At first the dressings under anaesthetic was meant to last for 6-8 weeks but very quickly this double and we were still in the same position and this was when I realised I had to do something myself and find out whether this really was an option and a risk I was willing to take.

By March 2016, I had finally found a surgeon who I knew had experience in dealing with CRPS amputations and so my mum and I travelling to see him. It was an extremely long drive, about 6 hours, which was agonising with CRPS but it was worth it. During my appointment I explained the problems I was having and my reasons behind wanting to have a below knee amputation. The surgeon said that he was willing to do the surgery, however, he said that it would be better if I found a surgeon closer to home because of the follow-ups and rehabilitation involved. This was also when funding from the NHS was refused and they said that they would not pay because it ‘wasn’t essential’. I spent hours researching surgeons in the UK who did amputations and I think I probably sent out about 40-50 emails to different surgeons in total. Eventually, I got a reply from a surgeon who said he didn’t do amputations but he knew someone who did and that might be 4able to help. About 1 week later I went to see this surgeon and he was brilliant and he also agreed that with all the secondary complications from my CRPS that a below knee amputation was my best chance of any kind of recovery. After having the usual psychiatric/psychological tests and seeing the rehabilitation consultant and prosthetist they all agreed that the surgery could go ahead.

On 18th July 2016, I went into hospital to have my right leg amputated below the knee. I arrived at midday and I have to say, I was not nervous at all until the nurses came to tell me at about 17:00 that it was time to go to theatre. I said goodbye to Dan (my fiancé) and my mum and I was taken out my room, down the corridor, down in the lift and to the theatre. To be honest on my way to theatre I was totally panicking and the nurses were trying to make light conversation with me but to be honest I couldn’t really think about anything else except thing of all the possible outcomes.
…When I woke up, the first time I looked at the clock I think it was about 9pm. I was so relieved it was over and my leg was gone. The following day, the recovery nurse came to see me and said, ‘Do you know the first thing you said when you woke up was?’ and I replied no. She told me, ‘You asked me if it was gone?’ I think that pretty much sums up how I felt about the whole thing really. I spent that night in intensiv3e care to make sure that everything was ok and then I was moved back to my room the following morning. I spent 6 nights in hospital, I had an epidural after the amputation for 4 days and that was then taken out but after that the pain was so much less than I had before from the CRPS. I had intensive physiotherapy with a lovely lady called Jenni, trying to relearn my balance, being able to get out of bed, going up and downstairs and being able to get up off the floor.

The first week at home was difficult, getting used to doing more and more things for myself, having to tackle the stairs and things but I spent a lot of the time making more Lego models, including a VW campervan which looks amazing but too mum and I about 3 full days. I started having regular physiotherapy and just 16 days after my operation, I started walking on a PPAM aid (inflatable and metal pre-prosthetic leg). It felt amazing to be upright walking for the first time in 2 years. It was the simple things that surprised me the most at first, immediately after I was able to put a duvet over both my legs, I was able to shower my leg, able to sleep the whole night through without waking up and most importantly I am PAIN FREE and have no CRPS symptoms.

On 5th September, I got my first prosthetic leg and just 4 weeks later, I can now walk unaided for shorter distances and with a stick for longer 1distances. I still cannot wear my prosthesis all the time but I am gradually building up. My stump has shrunk so much that on the 17th October I am getting my second socket so hopefully it will be comfortable and fit well. Recently, I have started going back to karate training. I am also doing swimming, handcycling and wheelchair racing in the hope to reach the Tokyo 2020 Paralympics doing para-triathlon.5

Although amputation is not recommended for people with CRPS for several reasons mentioned above, I am extremely pleased with how my amputation has gone and I am finally living life to the full. I am extremely pleased with my progress and hopefully things will continue to improve.

Thank you very much for reading the update to My Story.

Hannah Moore

This Post Has 9 Comments

  1. Anonymous

    Hello Hannah Moore. My name is Amelia, I live in the U.S. and I found your video on your choice for amputation. I am in my early twenties and was born with mild Cerebral Palsy on the right side and at the age of eight I had a procedure done to try and help my foot not to curve into itself. A pin is now holding a part of one of my tendon’s in place and even though the doctors said I would be able to walk right, and that the swelling on my foot would go down it has not, I have never been able to put my foot down without pain, and have to walk on the front center part of my foot. Since my surgery I have had bouts with swelling, pain and discoloration. I was officially diagnosed with CRPS in January of 2015 however, when upon going to a trade school the pressure of walking for long periods of time finally took its toll on my body. The pin I spoke of earlier has been rejected by body since the surgery and is starting to effect the other parts of my body and I know this is a long comment but I wish for you to know, that for years I have considered amputation, since reversal of my procedure is non existent, and seeing how you are doing so well and how you had the strength to follow through I feel a renewed hope and strength to finally go for what I feel would really help me and my body. I thank you for giving me the that little extra push.

  2. Graeme Monk

    PLEASE HELP ME!
    I’m a wounded serviceman and I’m suffering with crps in my left leg. I cannot find a surgeon to amputate! Who did you see?
    Please please help?

    Graeme

    1. Laura J. Greco de Bove Carrasco-Ruiz

      Hi Graeme. My name is Laura and I live in Birmingham. I’ve had CRPS since January 2006 and have been asking for an above knee amputation since mid 2009.
      Last year in February. 2016 I saw a Mr. Stephen Mannion who work in Blackpool. If you’re out of his area you’ll have to pay for a private appointment.
      His CV is on the internet. He has extensive experience of amputations and is a fantastic man to talk to. He’ll tell you directly what he thinks and options for moving forward.

      There iis also a Mr. Vincent Smythe from Manchester who also has experience of performing amputations for those with CRPS. I’m not sure if he does private work though.

      Hope this helps xx

  3. Miss P

    I’m so happy to hear that you’re doing so well it’s fantastic. I bet you’re trying to do everything you couldn’t do pre chop and it’s so good to see you have the same smile on your face I see from other crps ampies.
    I also have crps type 2 and after 24 years of fighting I was lucky enough to find a brilliant plastic surgeon who agreed to my chop.
    I knew all of the risks and even tho my crps has come back I’m still so happy I was able to have my amputation I’m an above knee. It was hard work don’t get me wrong and yes my crps has spread but I can do more and more each day. Unfortunately because of the crps I have to use a special socket (infinite socket) as my leg swells & shrinks so much that a traditional socket will never work.
    All I can say to those that are still fighting to get the doctors to understand and agree to amputate… KEEP fighting! I know it’s so hard both physically & mentally and each refusal is utterly gut wrenching but don’t give up!!! You do have to under go lots of pre-chop assessments and the more physio you can do to make your body strong going into the op the better trust me you will recover faster and will be up walking much quicker. It’s a hard road to travel and there are lots of up and downs post op but if this is want you need you will get through it! Hey you’re a crps warrior already! Keep fighting and don’t give up! I wish you all the very best you’re amazing!

  4. Shannon

    I developed CRPS after a crush injury, which happened during a car wreck in ’09. After many years and 14 surgeries to try and make the leg function and feel better, I eventually approached my surgeon about having it amputated, and had an ERTL BTK procedure on 06/30/15. I did heal well though, and it took me a year before I could even be fitted for a prosthetic. Now, although I’m wearing one, things just haven’t worked out well – and I potentially may need to lose the ERTL bone bridge to fix the situation – but I still think having my leg amputated is easier to deal with then dragging a CRPS-affected limb through the world. I hope things are still working out well for you. I may be a bit frustrated at the moment, waiting for scan results to determine if I need a revision surgery, but reading stuff like this really helps. I’m curious, how much information on amputation for CRPS have you been able to find? It’s seems to be quite the taboo subject, and I was honestly surprised my surgeon didn’t fight me at all about it.

  5. Rick Barton

    Hi Hannah,
    My name is Rick Barton, I had surgery 7 years ago for bilateral hernias. While the right side healed perfectly, the left side didn’t and I now have servere nerve damage.
    About 3 years ago I stared getting a crushing feeling in my left foot . All I would do is stick a sock on and the pain would be excruciating, and being told I had CRPS was a bombshell . I was medically discharged from the Army in January 2017 and now registered disabled. My local GP is great but lately I have been thinking ” I can’t be dealing with the pain anymore and wanting to get back the quality of life that I used to have” , plus all my bad moods due to CRPS are having a detrimental effect on my relationships with ALL family members and with myself. I am unable to wear socks and shoes , so since leaving the military I have been unable to find work as no one will take me on as wearing flip flops to a interview and then to work isn’t a good idea. I have now decided enough is enough and wish to ask my GP for a re feral for a below knee amputation. I was hoping that you could possibly guide me through or give some advice.

    Kind Regards

    Rick Barton

  6. Bine

    I got CRPS 2007 and went to all the steps of therapy and surgerys you describe. At least I also went for an amputation of my lower leg- it was a big fight to find a doctor who agreed to do ut, but…it was such a big relief. More function and less pain. I am wishing you all the best for your goal Tokyo 2020. I am playing wheelchair tennis and took part in London 2012. An experience I will never forget. Greetings from Germany

  7. Charles Rollings

    Hello, Hannah. My wife and I were really inspired by your story, as we both wish to be amputees but can find no one to perform surgery on us. We will pay for me to have an RHD amputation and my wife to have an LHD and RSD amputation.

  8. Dirk-Stefan Droste

    Dear Hannah,
    many thanks for your article. An amputation is a really life threatening decision but for chronic pain patients especially CRPS sufferers it can be a perspective in their life and bring them back to a nearl normal life.
    I have suffered with CRPS for four years after a broken left foot and had my foot and foreleg removed in 2015. with a prosaic I was able to regain my life again, start working again, going on holidays etc.
    But after a year and without any accident or other issue I got a CRPS on my right foot which developed to the same extreme state on my right foot, which was then amputated laste year in November.
    Now I am on two prostetic legs and the quality of life now is nearly the same as before the disease. I am nearly painfree and do not need to take any prescription anymore.
    I would never advice any CRPS patient an amputation but after many wars with no efforts in reducing pain or raising lie quality it should be considered. Maybe we can built up a community for CRPS patients who had undergone an amputation.
    BTW I am the founder of the German CRPS network, giving support to crps patient in Germany, Austria, Switzerland and Luxembourg.
    http://www.crps-netzwerk.org
    (Just in German at the moment, but we are working hardly to get a translated/international website soon).

    Best wishes and take care
    Stefan

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