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Revision TKR if at first you don't succeed....<

well, here we are 18 months post op and far worse off than I was before surgery. I still get horrendous pain from the knee, have terrible pain in my back which the physio says is very largely due to how badly I've been walking for so long now and the hospital are doing exactly nothing to help, Every time I go they tell me something different but do nothing to solve it, just tell me to come back in 3 months. The physio has told me to start using the crutches again to try to enable me to at least leave the house occasionally, but I still can't walk more than a couple of hundred yards without being literally doubled up in agony, despite the daily dose of 21 painkillers I take - 2 paracetamol, 2 Tramadol and 300g Gabapentin, 3 times a day. I'm so fed up and depressed that I just don't want to go on fighting any more.
 
puppywalker,
Sorry to hear you are still having problems with your knee, how frustrating for you.
Have you obtained a second opinion?
I agree with the physio, start using your crutches so you can get out more.
 
I asked my GP to refer me for a second opinion but she's not very keen - she said I'd need to go right to the back of the waiting list and the new consultant might not like trying to sort out what's been done already. Apparently I have no choice over which consultant I would be seen by. I really don't think I care any more and that's the truth. I've been saying for more than a year now that something's not right, but nobody will listen to me. They just keep taking X rays and saying either that they can't see anything wrong or giving me a different diagnosis every time I see them. The last consultant I saw told me there was nothing wrong but told my GP that there was a radioluscent line showing on the latest X ray, whatever that means. I did Google it and from what I could make out, it might indicate a loosening of the joint, but I'm not a doctor so I could be wrong.
 
puppywalker said:
I asked my GP to refer me for a second opinion but she's not very keen - she said I'd need to go right to the back of the waiting list
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That's true but you've already wasted time with all these 'opinions', haven't you?
puppywalker said:
and the new consultant might not like trying to sort out what's been done already.
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That's nonsense! A revision surgeon is accustomed to sorting out messes made by others. That's his stock in trade!
puppywalker said:
Apparently I have no choice over which consultant I would be seen by.
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Totally UNtrue. Look at this poster I just got from the NHS Choices - check the green arrow on the right.

Earlier on, I also offered to find you one or two possible second opinions but for that I need to know where you live in the UK. Also, you really have to stand up to your GP as she is denying you your lawful rights.
 

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Thanks Josephine. I live in Scotland, just outside Glasgow, and I think you said before that you didn't have details for this area. The time I've wasted is one of the things that's really getting me down just now. There is a surgeon in my local hospital who has a very good reputation - he's operated on a friend of mine - and I would like to see him, but was told that I wouldn't have that choice - I could be referred to that hospital but not to a specific surgeon. I'm just so fed up with being ignored. I know whether I'm in pain or not regardless of what their X rays say or don't say. I don't understand my GP's very obvious reluctance to refer me for another opinion as she's usually very supportive. I know the surgeon I'd like to see has private and NHS patients and I did think of getting a private consultation and then seeing if he would treat me on the NHS, but I think I need a referral even for that, don't I? I'll download that file in the morning and have a look - it's getting a bit late now.
 
I went the private route your are suggesting for both hips.

Tell your GP to write you a generic referral letter and that you will hand carry it to your surgeon of choice. Mail (or scan and email) the referral letter to that surgeon's medical secretary. Be sure it is the secretary that deals with their private patients. See the consultant privately and get that second opinion. Then get on their NHS list if a revision is needed. Be very firm with your GP. You have a right to chose your surgeon.
 
Thank you Jaycee, that is so helpful! I'll phone this surgeon's private secretary this afternoon and discuss it with her and then I'll get a referral letter from my GP. I feel much more confident now knowing that it's my right. I looked at the poster Josephine recommended as well. If this surgeon also says there's nothing wrong I don't know what else to do, but I'll cross that bridge when and if I come to it. I've seen so many different doctors and had so many diagnoses in the last year that I no longer know who to believe, but this surgeon comes with a very good reputation and at least I know someone who has actual experience of his work - he did both her knees and she has nothing but praise for him, so I'll give it a go. Can't get much worse than the treatment I've had from the hospital where the surgery was done! Many, many thanks xx
 
Puppy walker, just be sure this surgeon has experience with revisions. I've learned that we cannot always trust people just because they are in the medical field. We need to advocate for ourselves. I see that you said you're outside of Glasgow, my family is from Airdrie.
 
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I'm very sorry to hear that you are still in so much pain. I was very lucky in that I found a revision specialist that was able to diagnose my problems easily and I had my revision rather quickly (8 months post my TKR). I can truly understand how frustrating it is to have your surgeon tell you there was nothing wrong when you know that there is. I hope you finally get a diagnosis and a plan of care for your knee.
 
Thank you both. I will check this this guy does revisions - thanks for the warning. I'm in East Kilbride, KarriB. newlybionic - the really frustrating thing is that every time I go back to the hospital they tell me that their previous diagnosis was wrong and it's something else that's not right, but they do absolutely nothing to improve it. It really gets to me, having my hopes raised every 3 months that something will finally be done to sort this out and then having them dashed again on the next visit. If they don't know what's wrong I wish they'd just be honest and say so, it would be much easier to come to terms with.
 
right then, I now have an appointment with my chosen surgeon on 6th December! I'm going for an initial private consultation and will take it from there. I had to laugh - he's off sick just now with an ankle injury - you'd think an orthopaedic surgeon would know better! Poor man. I checked and he does do revisions. So now I phone my GP and get a referral letter and don't let her put me off. Thank you for your help, I feel more energised now about getting this sorted xx
 
The multiple diagnosis may be the health workers are inexperienced dealing with implants and revisions. This is why it's so important to have a surgeon with experience looking at implants and recognizing possible issues.
 
puppywalker said:
I live in Scotland, just outside Glasgow, and I think you said before that you didn't have details for this area.
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Oh yes! So I did!
puppywalker said:
right then, I now have an appointment with my chosen surgeon on 6th December! I'm going for an initial private consultation and will take it from there. So now I phone my GP and get a referral letter and don't let her put me off.
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THAT'S the way to do it! Well done you!

But do make it clear to the surgeon that you're only seeing him privately for expediency and you really want him to treat you on the NHS. And don't feel coy about this - it's done it all the time. I've done it three or four times to the best of my recollection!
 
thanks Josephine, it's nice to get a pat on the back! At the moment I'm concentrating on finding out what's wrong and if it can be fixed. If it means having to pay for a scan or whatever, then that's what I'll do, just because of the time factor. But if it needs revision surgery or whatever I'll compare the waiting lists. I don't think any price would be too high to get this blankety-blank thing sorted out once and for all, but first things first. xx
 
Oh, I don't think you'll have to do that. Most surgeons will get you seen to reasonably quickly given your circumstances and that will go for scans and stuff as well. He'll see you've had a rough trot these past months and get it expedited, I'm sure.
 
@puppywalker Well done on getting that appointment. Hope it goes well! Be very firm with your GP's office. Some staff are put off with patients taking the initiative. My GP's office took over 1.5 weeks to type a referral letter to my chosen surgeon. I knew they were stalling and when I questioned the GP she said "you should not try and work around the system". Excuse me - I am paying to get a second opinion and working within the system! :hissy:

Hang tough and good luck moving forward. Please update when you can.
 
I left a message the other day at my GP's surgery asking for a referral letter and this morning got a call from the GP herself (she only works 1 day a week there). No problem at all with the referral, she knows of this surgeon's work and said I couldn't have made a better choice and apologised on behalf of the NHS for the way I've been messed about for the last year! She also told me not to be afraid to ask to be treated under the NHS if there's something that can be done. I'm a bit confused as she was lukewarm when I spoke to her before about a second opinion, but now that I've taken matters into my own hands she's back to being as totally supportive as she usually is, but hey, so what? Makes me wonder whether there are some sort of guidelines for GPs to put people off asking for 2nd referrals? Who knows. But things are moving again and hopefully we'll make some sort of progress now. Roll on December 6th! Thank you all for your advice and support, it's very much appreciated xx
 
Wow - what great news. It's difficult taking things into your own hands but when you are supported it certainly does ease the stress. Well done! Please keep us updated!
 
Your GP may have acquiescenced because you took the bull by the horns. :thumb:
 
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