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Amputation? Doc says no!

HOME Forum Discussion Forum Amputation? Doc says no!

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This topic contains 7 replies, has 3 voices, and was last updated by  Lemon 4 months, 3 weeks ago.

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #2143330650

    satonmybutt
    Participant

    After a major knee surgery I had an accident at work and so the doc suggested total knee replacement. I was 42 and despite a lot of knee problems I was very active.
    I had the TKR but since then I have been in chronic pain and I am now a full time wheelchair user as I have mechanical damage to my shoulders that I’m told is down to so many years on crutches.
    I have asked, I have begged the consultant to amputate, the joint clonks and that causes more pain. I’m actually not bothered about a prosthetic, I just want rid of this knee joint and the pain. The doc has said that there is a risk of still being in pain after an amputation but I have tried to explain that the mechanical (clonk) pain would be gone.
    His answer was that he swore an oath to cause no harm and the two other docs I have seen agree, the problem is that by no amputation he is causing harm, the pain is so bad that I’m unable to do anything and I’m 49 this year, my life is passing and I’m not living it.
    I have even considered forcing amputation, I have thought about using a tourniquet on my leg until they have to amputate because it has been left on too long and I have even considered more drastic ways.
    How do I persuade this consultant, I know amputation is drastic and I really would rather not have one but I need to be given a chance to fight and not just sit here on loads of meds.

    #2143330652

    misspbluedeva
    Participant

    Hi,

    I completely know where you’re coming from. I had to go through the same problems with consultants saying no. After 24yrs of asking I finally had my AK amputation 6 months ago. I went to my GP who referred me to my nearest Disabled Service Centre. I saw one of the trauma consultants there and after a very long discussion with him trying to talk me out of it due to it being a “beast of an operation” (his words not mine) He said he would review me in 3 months after under going intensive physiotherapy and counselling to kind of show how serious I really was and to prove to him that I was not taking this decision lightly. He reviewed me 3 months later. Taking the advise from my Physio and my counsellor ….I got a Yes!! Finally after 24 years I had the amputation and yes I’m still in pain but I’m not dragging around a dead knackered leg. I’m not saying it’s easy. It isn’t, but if you can do as much physio as you can pre op it will help you so much post op. I’m not sure where you are based but I highly suggest doing some research on doctors that do revision surgeries/trauma that advise Disablement Service Centres near you. Most centres have a prosthetic department that have consultants they refer to when amputees have prosthetic issues. Then go to your GP and get them to refer you to that consultant at the DSC. So try going for it that way. I really hope this helps you find a way.
    If this is what you truly want then don’t let anyone talk you down.
    There is always a way around the words “can’t” and “no” you just have to find it.
    Good luck

    misspbluedeva

    #2143330654

    satonmybutt
    Participant

    Thank you misspbluedeva, I’m seeing the consultant again next month, I am in Essex, England and have been thinking about getting a referral to the Royal National Orthopaedic Hospital.
    I won’t stop asking, maybe one day they will listen, I’m glad they finally listened to you!

    #2143330998

    Lemon
    Participant

    So, how did your meeting with the consultant go, have they agreed?
    I keep thinking of a diamond tipped cutter I have in the shed, anything to get rid of this clunking and knee pain!….

    Luckily I’m not brave enough.

    #2143331950

    satonmybutt
    Participant

    Well I have still been unable to find a consultant to help, I have seen a psychiatrist at the request of one consultant and she has confirmed that I am making this decision without any mental illness and a full understanding of what it entails.
    This of course is great but I still can’t find a consultant that will actually see that this is the right thing to do!
    Mr Greer at Southend Hospital said he would do it if he knew it would be 100% successful and I said it would be, because without that clonking knee joint, the pain wouldn’t flare up. He still refuses.
    My nerves are messed up, a cold shudder is felt as pain as it goes through my legs and so the knee clonking causes me severe pain and it happens so often that I have been laid up for most of this year.
    I am scared because I know that eventually I will get depressed, I am fighting every day but it is tiring and I have even considered doing something to compromise the leg and force amputation which I really do not want to do but my life is hell at the moment!
    I told the consultant that it is like the film 127 Hours, I literally have to lose this limb to save my life, but all I have heard is consultants saying they took an oath to cause no harm and they believe amputating is harm and yet doing nothing is actually causing me harm!

    #2143331983

    misspbluedeva
    Participant

    Hi,
    Oh I’m so sorry it sounds like you are stuck between a rock and a place of utter hell. I checked on here hoping to hear some good news for you. I’m so sorry that you’re still having to deal with all the politics. I have been asking around and if you could ask your gp to refer you to a Mr Gikas at the RNOH. I know that Mr Gikas did my friends AKAmputation 2yrs ago. He has a great record from my friend. He really took care of her and she was left with a really neat scar. So to save you having to go back to your consultant you can ask your GP to refer you to him instead. As I’m sure with everything you’ve been thru so far your GP understands you and your needs better than your consultant.
    I went via my gp referral. It cut out having to wait for consultants appointments begging them to refer you.
    I did it that route and then I was sent to the DIsablement service centre to start the prep assessments and prehab with the physios. Let me know how you get on and I will keep asking about to see if something else might help. Sending you the biggest hugs I know how gutting it can be having the doors slammed shut at the last minute. At least you have some of your pre assessments already done so that should help too. I will keep my fingers crossed for you and I will keep checking on here Stay strong!

    #2143331984

    satonmybutt
    Participant

    Thankyou misspbluedeva I will get a referral to see him!

    I have been really struggling since New Year, I only left the house just over ten times in 2016 and that coupled with me turning 50 this year has made me feel very low.

    If I can just get this surgery then I will be free to move without that pain and I can then get out and about in my wheelchair more

    Thank you for the info

    #2143332374

    Lemon
    Participant

    I saw my consultant the other day, he says my new knee is fine and what I’m feeling is neuropathic pain.
    Not sure I believe him, still taking codeine or tramadol to get through.
    I must admit I’d rather be without the knee/leg if it would stop the pain. 🙁

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