CRPS - is there an alternative to amputation? — Scope | Disability forum
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CRPS - is there an alternative to amputation?

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Jemma_lennon1
Jemma_lennon1 Community member Posts: 1 Listener
edited November 2019 in Disability rights and campaigning
Hi, I am trying to get some help/advice for my dad. He broke his ankle in two places 7 years ago now. Long story short since then he has been diagnosed with planta faciatius which then years later they said it was actually CRPS. In these years he has had a second operation to try and fix it, cortisone injections, acupuncture, physio, hydrotherapy and evening had some screws removed. Nothing has helped and has only made the pain worse. He has been on so much medication over the years but at the moment his main pain relief is oramorph and codeine. Today he had an appointment with a new surgeon, she said basically amputation is the only option. My dad is fully against this and really doesn’t want to go down that road but is co tangly crippled in pain, completely house bound and depressed. He has put on 5 stone since it happened due to not beong able to move about. He also has specialist inner soles to help as his gait went on his hips. Just hoping someone may know of any medication that may help or an alternative to amputation. He asked about fusing his ankle and they have said it’s pointless :(
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  • hdeakin
    hdeakin Scope Member Posts: 126 Pioneering
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    Hi @Jemma_lennon1 , I am sorry to hear about your Dad. I have CRPS. It is a horrible illness. Have you seen a pain management consultant? Dr Helen Cohen is a specialist in it at Stanmore - Royal national orthopedic hospital. They also have a pain management inpatient 3 week stay for patients with CRPS. Bath-National hospital for rheumatic diseases is a good place and has some programs. Unfortunately, there is not a lot that helps CRPS. It is mainly learning how to manage the pain-which is tough. I am on similar strong pain relief too. Previously doctors were very negative about amputation or any surgery with CRPS patients as it can make it worse or not improve things. More recently I have seen in the news two young girls one in her late teens and one in her early 20s who have paid privately for amputation as NHS would not do it and are now pain free which is amazing. More research needs to be done. I am sorry I don't have any better news. Please don't hesitate to ask if you have any more questions. Best wishes hannah
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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
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    Hi @Jemma_lennon1
    Welcome to the community and I am so sorry to hear about your dad and his struggles. 

    I didn't know much about CRPS and have been doing a bit of research, I found this woman Helena Stone who has been doing a lot of campaigning about CRPS. She says 

    "I was in chronic nerve pain, so I always had a level of pain and discomfort. The pain could easily and quickly reach levels where I would be in agony. I struggled to live a normal life. I spent at least 80 per cent of my time in bed.

    "After amputation, I woke up with no CRPS pain. I have some phantom sensations and a bit of surgical pain but it is very well controlled."

    "Stay strong, positive and fight for what you need. If you are thinking about amputation, please don't underestimate the magnitude of that course of action. It seems a very tempting action when in so much pain 24/7, but the risks are very real and it is not a cure. Remember its okay not to be okay, seek support and speak to people."

    Have you seen the CRPS UK charity? They have an email address admin@crps-uk.org where you can get in touch to chat with them.

    Also Limbless is a UK based charity that offer support and information about amputation and I wonder if they could help at all? They have a helpline on 0800 644 0185 and you can email them on enquiries@limbless-association.org 

    We cant offer any medical advice on the community, but I am glad you reached out to talk about this and I hope someone can offer their personal experience and help.
    Scope
    Senior online community officer
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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    Hi, I have recently read a post from a man who was born with problem feet. His story is amazing. he was told the only answer was amputation..like your dad. He refused.

    His thread is entitled `I`m so lucky lucky lucky`      Not sure where it is...I`ll have a scout and get back to you. It`s worth a read. x Back soon        
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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    Jemma_lennon1 said:
    Hi, I am trying to get some help/advice for my dad. He broke his ankle in two places 7 years ago now. Long story short since then he has been diagnosed with planta faciatius which then years later they said it was actually CRPS. In these years he has had a second operation to try and fix it, cortisone injections, acupuncture, physio, hydrotherapy and evening had some screws removed. Nothing has helped and has only made the pain worse. He has been on so much medication over the years but at the moment his main pain relief is oramorph and codeine. Today he had an appointment with a new surgeon, she said basically amputation is the only option. My dad is fully against this and really doesn’t want to go down that road but is co tangly crippled in pain, completely house bound and depressed. He has put on 5 stone since it happened due to not beong able to move about. He also has specialist inner soles to help as his gait went on his hips. Just hoping someone may know of any medication that may help or an alternative to amputation. He asked about fusing his ankle and they have said it’s pointless :(

    Hi again...found it...the poster is CaptainWull and you can find his post in DLA/PIP/ESA. Or just go to the search box above and type in `I`m so lucky lucky lucky`.
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    Welcome to the community @Jemma_lennon1, I'm sorry to hear your dad is in so much pain. How are you both doing today?

    @hengster has just joined the community and they have CRPS.

    Scope

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  • hengster
    hengster Community member Posts: 19 Connected
    edited November 2019
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    Hi @Jemma_lennon1 , i am sorry to hear about your Dad's story. I have only been recently diagnosed with CRPS, as of 3 weeks ago by one specialist within the physio field. It's very difficult to know where i am on in my journey with CRPS, but i have seeked the help of seeing a Neurologist (self-funded) as i was concerned that the pain was spreading towards my upper body, when originally it was in my left leg. I think that only until various specialists are seen who have experience in CRPS, from neurologists, rheumatologists to Physios can you get definate answers. I am sure your Dad has seen alot already. Even though i have one opinion that i have CRPS and its likely that it is this (as the neurologist suspects it is without me having done tests yet). However, my GP advises me until further tests are done can this be known for sure. As I may have some underlying issue.  

    In the meantime, i have changed my diet drastically in an attempt to reduce any internal inflammation. As certain foods can cause more inflammation which leads to more pain. I have followed an Auto-immunue Protocol Diet which i have read up online about and you can google to find out more about this if you should wish to. I am by no means a medical or nutitional expert, so please take what I've written with some caution as everybody's bodies are different.  But basically i have stopped eating dairy, nightshade vegetables and anything grain based. I have even gone to the extent of not eating any form of beans and nuts as this is more strict. Foods can be re-introduced once you know what your body can tolerate. But for me, I am hoping to see someone who can advise on nutiriton at some point, once i have further tests, to know what my body can tolerate and not.

    I am not taking any presribed drugs, even though it has been offered to me. And i do alot of meditation to not think about the pain so much. It helps me to fall asleep.  I currently rub a CBD balm onto my leg which helps aluttle to relieve the pain.

    i dont know if any of what i;ve written may help as your dad has been suffereing much longer than me, and had a longer journey with it. 

    Rachel



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