I have been overwhelmed by stupidity!

Nurses came and re-did my bandages this morning, so that’s OK. They also came armed with a load of instructions, from the hospital, on how to care for my leg ulcers. I do not have bloody leg ulcers, I have lymphoedema FFS! These conditions are not remotely similar and treatment is entirely different.

Then I got my ultrasound appointment in the mail, which says its purpose is to assess my varicose veins. I do not have fucking varicose veins! The consultant knows this, he asked me, and had a look for himself, so why the hell this referral?

Neither of these things fills me with confidence. Is it incompetence, have I been confused with someone else – what the bloody hell is going on?

And the description of the scan process strongly suggests that it’s extremely painful for anyone with lymphoedema, and that  I’m likely to come out a hell of a lot worse than when I went in. And if there’s one thing I really don’t need, it’s anything that will make me worse – I simply have no reserves, physical or psychological, to deal with that.

So, when I get there, before anything else happens they’ll be told that both legs, from knee to toes, are immensely painful (something which the compression process exacerbates greatly, and if anything they plan to do will make that worse, then they can forget it. And I’m 100% serious about that.**

I’ve been on the ragged edge for months now, and fuckuppery like that above does nothing to improve matters.

 ***

** Over the past year I’ve lived with more extreme pain than most people would encounter in several lifetimes, and it’s still going on. I’m not about to allow anyone to inflict even more pain on me for the sake of what I feel is a pointless diagnostic procedure (no varicose veins, remember?).

UPDATE: I shall not be having this scan – see my reply to the comment from TTD for my reasons.

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14 thoughts on “I have been overwhelmed by stupidity!

  1. Oh FFS! Ron, you have THE most horrid luck!
    Is there a number you can ‘phone about the scan where a real person answers?
    Can you contact the consultant’s secretary? Could you write to her and let her know that you have been sent the wrong scan?
    I wonder if they have got you mixed up with someone else? It happens and it happens a lot due to the consultant making notes in the previous or next patient, talking into the dictaphone whilst still on about the previous patient, or being written up by one of the junior doctors
    As a former medical secretary, I can say that it happened a lot with patients and it was always better to sort it out with the secretary as she always had documentation to hand.
    You could contact your nearest lymphoma help group and ask them what type of scan you need etc. Always better to talk to a sufferer or a carer as those who are in it like you are know best, and no doctor, consultant or nurse knows better than them as they don’t actually suffer from it.
    Hope it all gets sorted out. You sound like me, everything goes wrong and takes ages to sort out!
    Jay x

    • Oh, it’s the right scan, Jay – just the totally wrong reason. Possibly I’m over sensitive, but NOTHING is ever glitch-free at this bloody hospital.

      • I wouldn’t say that you are over sensitive, we’ve all been with you on part of your journey,and can state categorically, that that hospital is full of glitches! I’d go so far as to say that that particular hospital is full of complete cock ups!

        • It is! And it’s not just me, I’ve seen it happen to others, and one old bloke was bullied dreadfully by the nurses, until I intervened. But what gets me is that so few people are willing to make a stand – and I know when you’re ill you really don’t want to be bothered, but good god, there are limits! They should be prepared to stand up for themselves at least!

          I have to say, though, doing so hasn’t actually done me any good . . .

  2. I’ve had a few ultrasound scans on various parts of my body, and they have to apply pressure on the part of the body that’s getting scanned. I don’t think there’s any way that you’ll be able to go through this procedure Ron. Apart from the pain it would probably cause you, I can’t see it being possible for the procedure to actually be carried out, not on raw, seeping flesh.

    • That’s pretty much my view, Tricia. I almost hit the roof today when the nurse was just applying cream to my GOOD leg – and she wasn’t unduly rough, so it’s clearly not on. And I’m going to have another pissed-off consultant! But, from the way they describe the test – which, they say, is likely to leave me covered in bruises – if they exert that much pressure they’re likely to punch straight through the skin. Bugger that! I know this test – it’s bog-standard for varicose veins, which probably explains the description – standard, computer-generated letter – and people with varicose veins don’t normally have skin like mush!

      Thing is, though, my legs are already in compression – this should have been done first if it could be done at all, but I’ve scoured the Lymphoedema website and nowhere is this recommended for the whole leg. It was bad enough on Monday, having it done on one spot on one leg, having it go on for two hours – one hour per leg apparently! – simply isn’t going to happen.

      I’m going to write to the consultant and explain, and cancel the appointment.

  3. This is like a bloody game of snakes and ladders. No sooner do you get a bit further, than you are back to square one – in just as much pain and to make matters worse, that awful isolation of realising that once again, your condition/symptoms have been misinterpreted – the nurses coming armed with stuff for leg ulcers – which you don’t have, plus an appointment for a scan to assess a condition, which you also don’t have.

    Jay’s approach seems a very sane one based on her experience of getting to the bottom of things. However, far worse is that you even have to do that (on top of everything else)

    Isn’t a lymphoedema specialist is what you really need to assess you? Preferably without touching!

    Sorry this has happened to you.

    • I was initially referred to the lymphoedema specialist, but he wasn’t available (he works in Africa every summer, apparently, which might be laudable, I don’t know, but it’s no help to his local patients), so I was switched to this guy, whom I should have seen in August, of course, but wound up in APH instead. Stuck with him now.

  4. Oh shit Ron, you really are damned either way aren’t you; I’d phone the consultants pa and ask them to double check; I really don’t know what else to say.

    Wishing you all best xxx

    • I’m writing to the consultant today, Jayne, to tell him I’m not having the scan. The state my legs are in it would be far too painful,** and potentially dangerous too; given the persistent infection there’s a risk of transferring it to areas as yet uninfected, a risk I have no intention of taking.

      **This actually is the standard test for varicose veins – hence the computer-generated letter – but people with bad veins are in a totally different league to people with lymphoedema in terms of risk and pain, and the integrity of their skin is far higher.

  5. I wonder if there is a way of going to the hospital for the scan and them actually seeing your legs? I’m sure that they would say a big fat “NO” to you having the scan and wouldn’t do it anyway as they could be liable for injuring you, or for spreading infection. Just a thought, as they would then have to explain to the consultant why the won’t do it, and may also recommend a different type of test.
    You could also contact the consultant, as you are writing to him anyway, to say that you cannot bear the pain anymore and that you are so desperate that you are willing to have the limb amputated. He already knows you are in a wheelchair, that you will be for life, and that having the leg there is the cause of so much pain and anguish that an amputation may be the only option. You suggest it Ron as some consultants try everything else when they know at the beginning that an amputation is necessary. Look at me being left for just the 10 months in agony and the leg being full of infection, that nearly drove me insane, yet they tried everything else first. It was me who suggested the amputation in the end, and then my wonderful new consultant agreed with me.
    Sometimes you have to be the one who gets the ball rolling that way.
    Jay x

    • Thing is, Jay, that would mean having the compression removed for no good reason, and having to travel home, with the risk of injury and/or infection (they won’t re-dress my legs, they’ve been asked and said no). True, it would be the same if I had the scan, and I’d still be very unhappy about it. Just another reason – that I’d forgotten about – for staying away!

      The other thing is that compression seems to be working, so I don’t want anything to mess that up. And – whisper it quietly – I haven’t got a lot of pain in my legs right now, either, and I intend to keep in that way by avoiding the scan. At the moment it’s mostly my feet, and that’s never let up since I got struck by lightning 30 years ago, and it’s bloody excruciating 24/7. Which is why, when my legs got so bad as well, it came within a hair of tipping me into the darkness. I was already on the ragged edge and had been for long time.

      I would assume that a CT or MRI scan (one of them shows blood better than the other – I think it’s MRI), injecting a contrast medium into the femoral artery, would yield the same information, but it would still need them to compress my leg to block the flow (to see if the valves leak), and that’s not going to happen. It would have worked for my heart, too, when I refused a test that had a 1 in 4 risk of stroke, but they wouldn’t do it – always, they go for the cheapest option and ultrasound, apart from the operator’s salary and a splodge of saline gel, is basically free.

      Good point about telling the doc about pain, though, even though it’ll mean lying exaggerating right now. I don’t care, I’ll do what it takes because I know the pain WILL be back! And I definitely need better analgesia.

  6. Ron is not the scan for the whole of your vascular system,not just your legs. I am sure that when they saw your legs they would not attempt to injure you.

    • I initially assumed that would be the case, but no – thighs to feet. They’re quite clear about that. The nurses say this is normal.

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