All hope is gone

  Kevscar1 12:08 12 Oct 11
Locked

The Ethics Committe voted 6 - 4 to suport my specialist stating no to amputation. Yet he is the guy who last Nov stated amputation was the best option. There is nowhere to go now. No hope of working or driving again. It will never get better in fact as I am more hypersensitive than any patient one specialist has treated in 20 years things are liable to get worse. I hope one of these bloody DVT's finshes things soon I can't go on on just willpower fighting the pain. Can't tell the wife it will kill her.

  spuds 13:11 12 Oct 11

Kevscar

I know that you have mentioned quite a lot about your problems regarding this condition and how things have gone along. But apologies for asking this, because its probably been asked before. Have you been referred to a Pain Management Clinic, which a local hospital might have?.

  Kevscar1 13:44 12 Oct 11

Pain management doctor who claimed to be RSD specialist gave me nerve blocks 17 years after they were declared to be less effective against RSD than had been thought especially on males. Professor up at Leicester says I also have a neuro-receptor disorder which is why I get instant immunity to any painkiller/local anesthic after one dose so any temporary treatments are a waste of time. In June I got e-mail saying Addenbrookes were trying to raise funds for me to have the 5 Day ketamine coma. Really thought I had hope then until got another one saying they were going to send me to germany. Just proved they really had no idea, germany banned it in 2009, at least one death there I know of. Thats it amputation was my last hope.

  johndrew 14:30 12 Oct 11

This sounds a lot like the PCT cutting its costs. Is there any way you could get a sympathetic professional to aid you in an appeal or go to your MP?

  Brumas 14:59 12 Oct 11

Any words I write will not offer you any succour old pal, but Hope springs Eternal. I can't begin to imagine what trauma you are experiencing, so all I can do is wish the decision may be overturned and you get the release you have been striving for all these months.

  Crosstrainer2 15:23 12 Oct 11

Kevscar

I sympathise with you and am in exactly the same boat, but don't wish for another DVT....Mine nearly killed me, basically I didn't seek treatment soon enough despite friends nagging etc.

It has left me with acute leg ulcers which bleed profusely if I stand for more than 10 minutes or so, restricted circulation and am forced to do what little walking I can with shoulder crutches.

I too asked about amputation, and was given what I thought was quite a sensible answer. I did a lkot of research myself due to my GP showing no interest at all in my condition beyond throwing more and more medication at me.

I'm sure you've heard this before, but it made me think twice about having my leg off. My consultant visited me and explained that even with an amputation there is a very strong likelihood of Phantom pain..A condition where your brain still thinks you have the limb and the pain can be worse than that which I suffer now.

I'm not sure if they were just fobbing me off due to my age andy other medical conditions, but he seemed genuine enough. I blame myself for the severity of my leg damage because I left it. It became so hot you could have cooked a chicken on it, and it had swollen to twice it's normal size by the time I finally got to hospital.

I know it's hard, but try to think of positive things that you can still do, rather than those you can't. Your pain relief should be (I can't mention what you should be taking here as it contravenes forum rules) looked at again and adjusted accordingly.

With the correct pain relief you would feel a lot better.

Hang in there old pal, and insist on seeing a pain relief nurse.

  morddwyd 15:26 12 Oct 11

I think we all know what you have tried and what avenues you have explored, and there's little more I, for one, can say.

If prayer and support are any good you have them both in plenty.

  Kevscar1 15:37 12 Oct 11

crostrainer2 some American surgeons have been doing amputaions giving full sympathietic nerve blocks 48 hrs pre op to 48 hrs post op not one patient has suffered Phantom Limb Pain. As an RSD sufferer I would have to be awake during the op, I put it to them that I was willing to be a guinea pig and gave the surgeon a discliamer in case anything went wrong. Told them I was willing to take the risk because if succesful no one in this country would ever have to suffer from phantom limb pain again and RSd suffers could have any type of operation without fear of spread. They had nothng to lose and a massive reputation boost as pioneers if it succeeded.

  Crosstrainer2 15:40 12 Oct 11

Kevscar

Any way of appealing? no win no fee type of thing?

  Kevscar1 16:10 12 Oct 11

Wasn't even allowed to make a personal plea just allowed to send papers and I don't know if they read all of them.

  sunnystaines 16:27 12 Oct 11

ring the law society to get a no win no fee medical neg solicitor for your area, on grounds that refusing your op is causing extreme unnessary pain/suffering when there arte no alternative treatment options.

wish you well good luck.

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