Advice needed about elective amputation!

As the title says, I need some advice about elective amputation!

A very dodgy knee became even worse after an accident at work shortly after recovering from surgery on the knee, I tried my best to recover using exercise and rest but alas I was in a lot of pain and so I decided to agree to total knee replacement.

I awoke from the surgery and immediately started to try and mobilise the knee, I was determined to get my mobility back and after three days I was allowed home. It was quite obvious early on that I wasn’t going to get my mobility back and my pain was worse than ever, I was seen by the consultant and he dismissed my pain.

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I had hydrotherapy, physiotherapy, meds, more meds and even more meds and yet my pain levels were still sky high, what was worse that I was unable to mobilise using crutches and now I am a full time wheelchair user. I have two types of problem, the first is nerve pain and there is not a lot to help but the second is what I call a mechanical pain, my knee clonks and its a big old clonk. I can’t tell when it’s going to happen, it could be when transferring from the toilet to my wheelchair or just moving my leg to get comfortable, it can even happen with the slightest movement of my knee and what is very frustrating is that I can’t make it clonk and neither can the consultant when he examines the knee and so I’m not sure he actually believes me? Imagine that, a consultant not believing a patient!

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I have spoken with the consultant and also two other orthopaedic consultants at Southend hospital about amputation, I can see the horror in their faces and quite quickly they do the consultant thing and take control of the appointment and I leave feeling like I haven’t been heard.
I have literally begged, I have even cried when I explain what it’s like to live like I do every minute of every day, I could see the nurse in the room getting upset and she understood but not the consultant. He told me that in the oath he took as a doctor, it says he will cause no harm and yet I believe that eating me as I am is causing harm!

Its now six years post op and I’m due to see him next month, my pain management consultant finally understood at our last meeting and promised he would speak to the orthopaedic consultant.
I am not going into this without understanding what amputation means, the last thing I want is to lose a leg but I can’t keep going like this and so I’m willing to make the sacrifice. I don’t even expect to walk again, that isn’t important, well it is but the main factor is losing that mechanical pain.

I have watched two above the knee amputations, I have watched videos about peoples post op journey and I have watched and read everything I can, I have read about people who have said that the elective amputation was the best decision they have made and I just want the chance to fight.

What I need to know is, what are my rights?
Can I do anything to make him take me seriously and help me?

Please leave a comment if you can help.

5 thoughts on “Advice needed about elective amputation!”

  1. Hi I’ve had 2 amputations above the knee due to CRPS (I think u already know though).
    You must think about the pros and cons of having an amputation. There is a chance that the condition may spread yo other areas, there’s a possibility that your stump will be left with hypersensitivity which in turn may cause you distinct trouble in getting a prosthetic. Having an amputation doesn’t necessarily mean that the pain will go, you may end up in more pain as well as having phantom limb pain which can be awful.

    On the other side of it you may be able to get a prosthetic and learn to walk again, the condition may not spread and your phantom limb may be something you can deal with.

    If you do elect to have an amputation I would most certainly speak to the anaesthetist and ask to have an epidural before the op, during and after. This will give u a chance of the nerves not causing you trouble post op, the epidural may also stop the spreading, hypersensitivity etc. So it’s definitely something I would speak to them about.

    Hope this has helped. Take care and if u need to chat just let us know.
    Victoria

  2. I’m sorry you are going thru this…it pisses me off when docs don’t listen or take you seriously! I’m going thru some of that…took almost 10 years for docs to listen and finally get proper diagnosis of MS along with 2 failed back surgeries and neck issues that disability company things I’m faking…I say fux you on not believing my pain and what I can and can’t do! Now on to wanting to amputate your leg…I couldn’t imagine even being in that much pain that I would want to cut off half my leg…wait…I guess I could because there were times that if I could reach a knife I would have cut my head off just to get rid of the pain of my migraine and come to think about it…If I could take out the part of my back that hurts so bad and end up in a wheelchair would I choose to??? Maybe…so not judging, just wishing you the best of luck to you and how it ends up for you! Keep us posted…

    1. Thank you, its frustrating isn’t, what the doctors forget is we know what is happening to our body and yet they treat everyone as if they are faking it. In 1996 I was admitted to hospital with chest pains, I was told it was pericarditis and I was eventually moved to cardiac care.
      Our hospital didn’t have a great chest unit back then and so a few days later I was rushed in an ambulance to the London chest hospital and we went lights and sirens the whole journey.
      The angiogram was clear and a couple of weeks later I was back at the hospital in my town, a consultant marched in one morning and said “your problem is above the neck not below” and left.
      So I had ECG changes, on examination they could hear it was pericarditis and admitted me to cardiac care and somehow I faked that?
      However there are also some damn good docs out there! Somewhere!

      1. Ha! Somewhere is the right question or answer…hmmmm. I’ve fired more docs than I have! My hubs says they are all “practicing medicine” and that’s exactly right. They don’t know much more than we do. We know our bodies, yet they know better? doubtful! I think we no best and need to start listening better! The voices in my head were screaming “run” right before I got wheeled into the operating room for my 2nd back surgery…if only I listened! I was mere seconds of jumping off of the stretcher and running…I actually had a doc in the ER (many,many years ago) tell me that it was impossible that I “felt” my heart flutter. The only way I would be able to was if my chest was cut open and someone was squeezing it….ummm, what? I just left! It was probably more of anxiety than a heart attack (obviously…I’m still here) but really? Did he actually say that? Did he get his license from a cracker jack box??? I still get what I call “butterflies” in my chest every now and again but screw it…I would rather not know some times…lol! I hope you can find help with your issue. I’m sure your on pain meds…I’ve been on them for 5 years…Nucynta…it’s almost a wonder drug. It seems to help with EVERY one of my pains not just the back…even my MS/fibromyasshole pain too! But I’m sure somewhere deep down it’s causing chaos in my body and I will be paying the price in a few years if I don’t get off of it. But if I stay in constant pain 24/7 instead of 15/7, I would go mad! Keep everyone posted as to how you are doing…good luck!

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