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Saw the consultant yesterday, it was my last hope!

Zec RichardsonZec Richardson Member Posts: 156 Pioneering
I am struggling today and I am posting here because I can post without anyone I know seeing.
In 2010 I had a knee replacement, I was already a wheelchair user as my knees are so bad and years of using crutches has knackered my shoulders, wrists and hands.
It was soon apparent that the surgery left me worse off and I requested that they amputate my left leg above the knee.
They refused again and again and again.
I am now housebound, any movement of that leg causes the pain to soar and I know I will still have pain if they did amputate but I would at least be free to move without added pain.
I begged them, I threatened them, I saw a psychiatrist when they asked me to and a few years ago I gave up and tried to live with it.
But I can't, I think about suicide regularly because it makes my life so miserable and so I saw them again and still they say "no, we swore an oath to cause no harm" which is rubbish as inaction mis causing harm.
I threatened that I would use a combat tourniquet (plan B) to comprimise the limb, I am sure they think I am bluffing but now my Plan B is the only option left. It scares me but so does having to go on like this and I can't believe that they are refusing and forcing me to live in pain!

Replies

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,751 Disability Gamechanger
    Hi @Zec Richardson I am terribly sorry to hear what you have been going through. I can only imagine how awful it is for you! You mentioned you saw a psychiatrist, what was the outcome of that? Were they supportive?
    Disability Gamechanger - 2019
  • Zec RichardsonZec Richardson Member Posts: 156 Pioneering
    Ami2301 said:
    Hi @Zec Richardson I am terribly sorry to hear what you have been going through. I can only imagine how awful it is for you! You mentioned you saw a psychiatrist, what was the outcome of that? Were they supportive?
    Yes she said that I wasn't requesting the amputation because of mental illness etc but through desperation. It made no difference!
  • RoddyRoddy Member Posts: 389 Pioneering
    Ami2301 said:
    Hi @Zec Richardson I am terribly sorry to hear what you have been going through. I can only imagine how awful it is for you! You mentioned you saw a psychiatrist, what was the outcome of that? Were they supportive?
    Yes she said that I wasn't requesting the amputation because of mental illness etc but through desperation. It made no difference!

    Hi @Zec Richardson,
    I am very sorry to hear about your ongoing disabilities and pain. I am not a legal expert, but have you considered trying to find a different specialist to present your 'case' to? I do know that medical professionals do have to swear on oath that they will not do more harm, but if you can establish that further surgery would or could relieve you of additional problems you may then be in the position to 'demand' what is your right.   
  • Zec RichardsonZec Richardson Member Posts: 156 Pioneering
    I have tried to look into what my rights are, I know that quite a few people have been successful at getting an ampuation in similar circumstances.

  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @Zec Richardson and thank you for feeling comfortable enough to share this with us all. I'm sorry this has caused you so much upset. I cannot imagine how difficult this must be. You said you are posting this so people you know what see. What is your support network like? Is there anyone you could talk to about be your suicidal thoughts and have you mentioned this to anyone else?

    If you continue to feel like this I really would urge you to seek medical help regarding your mental health and if you ever feel like this then please do be in touch with the Samaritans who are available 24/7.

    Please do continue sharing your thoughts and I hope we can continue to support you through this.
    Scope

  • Zec RichardsonZec Richardson Member Posts: 156 Pioneering
    Hi @Zec Richardson and thank you for feeling comfortable enough to share this with us all. I'm sorry this has caused you so much upset. I cannot imagine how difficult this must be. You said you are posting this so people you know what see. What is your support network like? Is there anyone you could talk to about be your suicidal thoughts and have you mentioned this to anyone else?

    If you continue to feel like this I really would urge you to seek medical help regarding your mental health and if you ever feel like this then please do be in touch with the Samaritans who are available 24/7.

    Please do continue sharing your thoughts and I hope we can continue to support you through this.
    Thank you Chloe, I have an amazing support network. My wife and daughters are great and they are the reason it is just thoughts, sure it would end my pain but at the cost of causing them pain and I couldn't do that!
    It is harder to discuss my thoughts about comprimising the leg, I have told the consultants and they just raise a hand and say they can't discuss it and it obviously is hard for my wife to imagine what I am thinking of doing!
    I need this surgery, but I can't make the consultants understand.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @Zec Richardson, I'm so glad you have such a good support network around you. I can understand your hesitation around this. Have you tried getting a second opinion?
    Scope

  • SeanchaiSeanchai Member Posts: 411 Pioneering
    Hi Zec ....I am so sorry to hear your plight . Can I just say I have thought about ending it all ....thankfully , like yourself , have great support from my wife and kids ...i could never put them through that , even though in my darkest hour i have thought about it. Please seek more help , the mental stress of pain and the thought of no end to that pain is very frightening indeed. There was a report online a few years back about a mental patient who wanted his left leg amputated , of course the surgeons refused his request ...but after therapy and psychiatric treatment he still felt the same way ..... he told them all that he was going to commit suicide if he did not get the amputation he wanted ( but did not need physically) ..the surgeon eventually agreed to carry out his wish ..and removed his left leg . Within a year the patient wanted his other leg amputated as he felt suicidal due to being ' lopsided ' ....this is when it all came to light ...I have not read anywhere of the final outcome . It looks like it depends on where you come from ( postcode lottery ) ....surely if the doctors and surgeon agree that removing your leg would alleviate your constant pain , then it would be helping you . I think you have a good case and could take this further .
    Have you told anyone you feel suicidal Zec ? Good luck for the future my friend .
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @Zec Richardson.  So sorry to hear that you are going through such pain.  I had an hip replacement in 2015 for pain, but this has left me with even more pain and less mobility so I know how frustrating and painful you must be feeling.  A couple of years after my surgery I went to see a Consultant about getting my leg amputated as the pain was so bad and he refused.  While I was exasperated at the time, I do feel now that it would have been the wrong decision for me if I had gone ahead with it and glad that it didn't happen that way.  I now see a different Consultant to the one who carried out my surgery and he referred me to a Pain Clinic which is helping a bit, although I know it doesn't work for everyone.  Have you thought about that as an alternative to amputation?  If you still feel amputation is best for you then just keep chipping away at the Consultant.  Wishing you all the best.  :neutral:
    Winner of the Scope New Volunteer Award 2019.   :)
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi Zec

    I totally get where you are coming from. My wife has had three elbow replacement, each of which failed. After removing the last elbow she now has been told that there is no more they can do, so she has been left with no elbow and therefore no control over her forearm. Now she continually gets infection where the joint should be requiring daily trips to the nurse to dress it and when a hole appears pack the wound also. She has asked about amputation but with the same response as yourself
    Be all you can be, make  every day count. Namaste
  • Zec RichardsonZec Richardson Member Posts: 156 Pioneering
    Thank you for the replies!
    I have been seen by the pain clinic and I have learnt a lot from it but it ended when the consultant switched me from Buprenorphine patches to Fentanyl. I ended up in A&E as he had switched me to the same dose and Fentanyl is a lot stronger and I was struggling to breathe!
    I have spoken to my wife about the suicidal thoughts and I am very open about it. I have promised her that I won't take my own life and said that I would rather spend a lifetime in pain with her than end my life!
    I have read about many cases where people have gotten the requested amputation and it really is a case of getting lucky and finding a consultant he will agree and then it has to be carried out privately.
    I have seen about 5 consultants so far about it over 8 years, 4 at Southend Hospital and 1 at Colchester.
    I have been told to get a referal to Stanmore to the Royal National Orthopaedic Hospital, but its not an option. An incident 30ish years ago hit me hard and I have PTSD and severe anxiety about travelling, even going from Southend to Colchester was a journey through the back roads, motorways are hell for me. But I am better than ever with the PTSD, CBD has helped me more than any therapy or medication!
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