Leg update – amputation might be possible…

Be aware – gross ulcer photo below.

Just had a conversation with my GP. He’s been in touch with the vascular doc, who has said – this bloody obsession again – that compression is the only way forward. I told him, when he asked if I’d be willing to try compression and – these are my exact words – I said “I’ll suck it and see.” That’s all. No promises beyond that, just a willingness to try it and see what happened.

What did happen is that they wrapped up both legs, even though the right one was infected. The pain was huge and I had to cut off part of it as it was crushing my toes. After a couple of weeks, during a routine dressing change, there was a shilling-sized lesion on my left ankle where, previously, there had been nothing. Two days later the nurse returned to check the lesion – it was the size of my hand. And that point I called it off (and because of the pain).

It’s been tried on two other occasions, and it’s made me worse. There won’t be a fourth time.

Though, to be honest, the pain has been so bad of late I have been seriously considering it. However, I’m told, via the Tissue Viability Nurse, that my circulation would have to be checked first, and the only possible position to apply a blood pressure cuff is exactly where the ulcer is, and that would be far too painful to even contemplate.** Even the breeze from an electric fan is excruciating.

**Don’t get me wrong – the TVN would be quite happy to inflict horrendous pain on me. I won’t let her!

This is my ulcer, as of yesterday:-

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If compression isn’t suitable, then full-time bed-rest with my leg elevated to 30 degrees at least is the other option. That’s not going to happen for various reasons.

1. If it were to be in hospital, I sincerely doubt my ability to survive in such an infection-ridden environment. In six weeks last year I picked up 5 hospital-acquired respiratory infections. Eventually I had to have my right lung aspirated to remove fluid caused by my heart failure** (and doubtless the infections didn’t help either). And for my leg we’d apparently be looking at months in hospital. No way in hell!

**That, of course, is the same heart failure I’m now told I don’t have.

And I doubt my ability to survive, long-term, the perpetual fuckuppery with my meds in APH. At home I stick rigidly to a time-table, which keeps me stable. In APH the drugs rounds are hopelessly erratic, not happening at all some days, and never anywhere near the timetable I need to keep me stable.

2. At home, who the hell would look after me? Even now, I’m supposed to sit with my leg elevated. I even designed and built a leg support to do so painlessly, but it’s just not feasible. For a start, I have to pee every 15-20 minutes for much of the day. And in hospital, too, come to that, and no, I will not have a catheter! I’ve seen a grown man reduced to tears of pain having a catheter inserted, and again having it removed. As for a bed-pan, again, absolutely not!

3. I know from past experience that I will deteriorate physically if confined to bed. It’s happened in the past, when I still had my strength. If I was confined to bed now, I might never come out.

4. I have osteoarthritis in both hips. Being immobilised for a long period is a seriously bad idea

And if that’s not suitable, and frankly I won’t even consider it, the consultant is, finally, prepared to discuss amputation.

And that terrifies me. Bravado is all very well, but there’s a very real risk I won’t survive the surgery and, despite what I’ve said about that possibility, when it comes to the crunch I find that I don’t actually want to die after all. And, of course, there’s a very real risk he won’t do it for that reason (doctors hate adverse publicity – one of my GPs said, last year, when refusing to give me a particular analgesic “What if you die? Think of my reputation!”), but my GP is setting up an appointment, so we can at least discuss it. It’s no longer the forbidden subject it was.

In the meantime, in case it does happen, I need to dig out my weights to strengthen my arms as using crutches with one leg takes more strength than I currently have. Using my manual chair instead of my powerchair will help too. Of course, I’ll probably have a prosthesis eventually, but I see my future mainly on wheels.

But there’s no getting away from the fact that, having got through my 70 years with nothing more serious than having a toenail removed, the prospect of surgery terrifies me far more than I expected when there was no chance of it.

I know it sounds perverse, after everything I’ve said, but that’s how it is.

Finally, there’s the option of maintaining the status quo if that’s the only viable alternative. The nurses have said that this wouldn’t be a problem – they have others in the same position – but that would need very much better pain control than I currently have.

In fact, pain is the biggest problem. The ulcer itself isn’t disabling – the pain is.

Talking of which the nurses were supposed to be here today, to bring me a supply of dressings – they haven’t been.

One last worry – what if they take my leg below the knee – and I get another ulcer? Or the lymphoedema returns (it could, it’s only in remission – it’s incurable).

What then?

Note: Currently my legs are modestly compressed. This was my idea. They are wrapped from foot to knee in a double layer of 10.75cm ComfiFast Yellow Line tubular bandage. Not only does this protect the fragile skin, it also provides sufficient compression to stop my legs from swelling. It’s also the cause of much of my ulcer pain, as is the dressing applied to it. And if this causes pain of such severity that I am willing to contemplate death or amputation, then it surely gives you some idea of how much worse 4-layer compression – elastic bandages and cotton-wool-like (but very much firmer), wadding – will be.

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7 thoughts on “Leg update – amputation might be possible…

  1. ron my wife like you suffered badly with her bad leg with these untill she heard a oap talking about a nurse at neath hospital she ask the lady and she told her to ask for nurse kembrey she got to see this nurse in 2005 it was seeing her or having her leg off has told by her consultant it was for her to decide when but she got to see this nurse and within weeks the hole was getting smaller were today it hasnt come back but the downside is that one gets to wear stockings white and brown ones to keep the circulation going i hope this helps you decide jeff

  2. Ron, I know I’m a little younger than you but I have had the below the knee amputation and it has it’s up and downsides. While I had the leg, but was not able to use it I used a zimmer for the whole time to get back and forth to the toilet, kitchen and the living room which we had had to change into our bedroom. The nurses used to come out to me and change all the bandaging etc, but we all knew that the foot was never going to heal. I tried that for nine months but the wound would not close, the pain was constant and I was more or less housebound.
    After all those months, and a fair few falls (one that eventually broke every single bone in the foot), I went into have the amputation.
    You go to the gym twice a day and you are shown how to walk again if you are one of the ones that can have a prosthesis, or you still go into the gym to work on your upper arms, shoulders etc. Not everyone is suitable for a prosthesis and you have to accept that you may be one of those people.
    I saw people of all ages at the gym, we became a little group as we all had our amputations close together so the healing and gym had us all together as well. One woman was a couple of years younger than me, and the rest of the men where around my age – which was 53 at the time – three men where a lot older and one man had already had one leg amputated and had come in for the other one go!! He was in his 70’s and was amazing 🙂 Another was in his mid 60’s and he had a whole leg amputation – he found it a real struggle with his prostheses but he tried so very hard.
    Many, many “older” people have amputations due to diabetes and circulation problems. We all survived the surgery, we all had to take that chance.
    I am due to go into hospital in the next few weeks to have my left wrist fused – I have osteoarthritis in nearly every joint and my surgeon has joked that he’s going to make a nice pension out of me with all the work that needs doing.
    I know that the operations that I am going to have to have are all risky, as any operation is. I have Type 2 diabetes, have angina, fibromyalga and have just been diagnosed with Vascular Eczema – I have been told that I have every chance of losing my left leg in the near future if the other treatments don’t work.
    I joke about it now but inside I too am terrified. I don’t want to die, but there are times I wish I would due to the amount of pain I am in. I hate the pain that I get in my right leg, even though it’s not there any more. I hate the way I am terrified of wet floors, of the ice that is to come as I don’t want to fall. I have fallen because the house I live in doesn’t have wide enough doors for me to use a wheelchair, which I desperately need to be able to do so that I can take my leg off. I am not safe in the home because I have to have a shower over a bath. I still have to use my zimmer in the night time if I need to pee, I need to use it first thing in the morning to go to the bathroom. My doctor and my prosthetist have been telling me that I am not safe in the bungalow, but what can I do? Nothing, so I’m lucky that I have John.
    There are ups and downs to it all, but if you have such pain that you scream, you cry and you sometimes want to be able to chop it off and throw it in the bin, or you want to die, then the only thing that will help you is the amputation. Trust me, I know!
    If you need any advice or need to talk it through and weigh up the pros and cons, then I’m here and you can get in touch with me easily enough 🙂
    Take care
    Jay x

    • Hi Jay,

      Just a couple of points – apart from the diabetes, you’re pretty much describing me, plus there’s an awful lot more wrong which, I know, might militate against surgery. Personally, I doubt I’d survive it. Hell, it’s been 50 years since a dentist would give me a general, never mind for major surgery.

      This is me:-
      FMS, Cervical spine arthritis, Osteoarthritis, Long-term damage from being struck by lightning, M.E., COPD Stage 3, Heart failure, Aortic valve calcification & stenosis, Angina, Bilateral Lymphoedema, Venous Leg ulcer, Vascular eczema, Primary Addison’s Disease.

      COPD, heart, and Addison’s are all good reasons why I’d be considered unsuitable for surgery. Especially since, if I live (by no means certain even this close), I’ll be 70 in two weeks. My life expectancy, even without the risks of surgery, is poor.

      And this ” I don’t want to die, but there are times I wish I would due to the amount of pain I am in. I hate the way I am terrified of wet floors, of the ice that is to come as I don’t want to fall. “ pretty much describes my life for the past 25 years. And “if you have such pain that you scream, you cry and you sometimes want to be able to chop it off and throw it in the bin, or you want to die,” the last 3 years.

      I can be sitting here, quietly typing, and the pain will hit me out of nowhere – and I’ll scream. It’s entirely involuntary, and I have no control over it – I can no more not scream than not breath. And I’ve lost count of the times I’ve woken myself in the night, screaming in my sleep.

      I do know about the risks of phantom limb pain. And there’s also the risk that I could sprout another ulcer, or the lymphoedema could return.

      I’ve little interest in using a prosthesis, beyond being able to stand with one well enough to be able to cook occasionally. Other than that I’d be fine on wheels. It’s a long time since I’ve been able to walk in any meaningful way anyway, largely due to fall injuries.

      One day last week, I bumped into the guy from down the corridor who’s a double amputee but still relies on morphine – and we went from Hi, how’re things? to comparing suicide kits with terrifying speed! Which made me reconsider amputation somewhat. There’d be absolutely no point in undergoing the pain of surgery and rehab only to wind up just as bad, or possibly worse. I want the pain to end, not just take another form.

      And I’ve been thinking since the phone call about whether amputation is as desirable as I’d thought. Weighing the pain and risks against my poor life expectancy, amputation isn’t the bargain it would have been just a year ago, when my COPD was nowhere near as bad. I’m now stage 3 as I said. In august a bout of pulmonary oedema nearly killed me, and I’ve had a load of less serious bouts both before (when I didn’t know what it was), and since. I could die at any time and, if I were a surgeon, I wouldn’t even want to be in the same room as me!

      But, after all I’ve had to say on the subject of amputation, I seem to have spent the afternoon trying to talk myself out of it – I suppose because the fact that it might be a reality ramps up the fear factor – if I went through it only to wind up with the same pain (I already know there’s a lot of nerve damage, so it’s entirely possible), or worse, I couldn’t handle it.

      Still, at least I get to talk to a surgeon, and it’s entirely possible that I might get better pain meds out of it, which might be a safer option and is probably what I most want.

      I’m also less convinced than I was that the surgery would actually happen. My GP has always been totally against it and flatly refused to even discuss it, yet now he tells me he’s been talking to a surgeon about me. Increasingly I have a feeling that this is going to be an attempt to talk me out of it, and with really effective pain management I’d probably go along with that.

      My HUGE problem is that my GP won’t prescribe an effective dose of Oramorph. I need 30ml to shut the pain down. He’s convinced that dose will kill me (it hasn’t so far, though I daren’t tell him that in case he cuts me off entirely – he’d love the excuse). He’ll only prescribe 5ml – a child’s dose. I got the senior partner to get that increased to 10ml and, with care, I can ramp that up to 30ml occasionally, but not as often as I need.

      It’s this that’s pushed me towards amputation.

      Ron.

  3. Hi Ron. Re the surgery, I had my ankle fused and pinned a while ago under a nerve block. I can’t have a general anaesthetic due to multiple problems, and my spine is too damaged for an epidural. Of all the surgeries I’ve had it was the least traumatic. There were just two injections near the sciatic and femoral nerves, and my leg was dead to me for the next 24 hours. During the procedure they kept me lightly sedated, so I don’t remember a great deal of it, but in the recovery ward I was drinking tea and chatting while everyone else was groaning and throwing up! I would recommend it to anyone. The fact that I was pain free for so long was a bonus, as it is the first 24 hours after surgery that hurt the most. Good luck to you whatever you decide.

    Susan

    • Thanks Susan – something to think about.

      My problem is that anything even remotely invasive – even an i-v – has been so massively screwed up in the past year that I’m not sure I’d trust them to get it right. I even plan to write “This Leg!” with a Sharpie just below my right knee!

      I used to have a pretty high pain threshold, but I’ve had so much inflicted on me over the past 2 years through sheer incompetence (on top of that caused by my legs), that now it takes all my self-control to give a blood sample.

      My plan at the moment is to use the meeting with the surgeon – who, I’m sure, won’t be keen to have me as a patient given everything that’s wrong – to try and negotiate better pain control. The bottom line – the pain has to go. If that can be accomplished with drugs, fine (and I believe it can, but not with my GP in charge, as I explained to Jay). If not, then it’ll have to be surgery, because I simply can’t live with it much longer.

      Ron.

  4. I understand that you would rather have the medication – who wouldn’t? I also understand your anxiety about amputation, needles and everything being messed up. Remember, I started with the ankle fusion that went horribly wrong, resulting in me having an amputation some 10 months later. By this time I was in such pain but I was also terrified about the osteomylitis travelling up my leg and losing it all. I knew that the only way to stop that was to have the amputation and that carried me through to make the decision.
    I’ve not regretted the amputation and I know that I do have the right drugs, but breakthrough pain is still there as you know, and you need that extra bit to help with that.
    I have actually stopped the Oramorph now 🙂 and my MST has dropped to 30mg from 100mg 🙂 I can take the drugs if I want to but I try not to and I am starting to cope more. When I go in for this operation I know that the pain team will be on stand by for me as since this whole episode started, no-one in the NHS Scotland leaves me waiting or in awful pain 🙂
    Seeing a surgeon is going to be the first step to the rest of your life and starting with much better pain relief is the key.
    I’ve still to read up on Vascular Eczema – there has been too much going on with my health, and the mental health side of it, and John too has been suffering more as his COPD seems to be getting worse. Everything seems to come together in one huge batch!
    I’d be grateful if you could tell me a bit more about the vascular side as I am a wee bit worried that I could lose my other leg if treatment doesn’t help 😦

    • My Zomorph (similar to MST) is at 90mg b.d. and badly needs another increase. After the last increase, from 70mg to 90mg, I was actually pain-free for a whole 15 minutes! Seriously.

      OK, the pain overall was reduced but that didn’t last. Currently it’s far worse than it was at its worst last year – and I’d thought that was impossible.

      I know I’ve said that morphine isn’t as good as its legend suggests (we’ve all seen war movies were some poor sap has a shot of morphine then happily chats away while some bugger lops off his leg with a blunt pocket knife). Well, not in my experience. Then, of course, I wonder – if my pain is this bad WITH morphine (and it’s pretty damn horrendous – I can’t get out of bed without my Zomorph plus a slug of Oramorph), how much worse would it be without it?

      Really doesn’t bear thinking about.

      As for vascular eczema, the dermatology clinic prescribed Eumovate ointment. This has reduced the flakiness (which filled my bed with skin dust to which I was highly allergic**), but has done nothing else. The nurses have always said it’s incurable – they appear to be right, at least in my case. From what I’ve been told, though, it seems to be more nuisance value than serious.

      **Could this be a factor with John’s COPD?

      If John isn’t seeing a COPD consultant, he needs to. I had no idea mine was so advanced. I know it was worse – that’s the nature of the beast – but finding out it was at Stage 3 was a hell of a shock. I’ve missed a couple of my annual spirometry tests because I’m housebound and my GP expects me to attend the surgery – not going to happen. But they only care about the income from the tests – I never got any feedback and they must have known I was getting worse.

      If John is using generic inhalers he really needs to increase his dose as the damn things are so crappy. I’ve doubled mine – it really does make a difference.

      More later – got to get ready for the nurses.

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