Lounge Doctor

Bilateral TKR 2 years out and facing up to facts

I am still awaiting an appointment for a nuclear scan by a NHS hospital which one of my “second option” surgeons trusts to do a good job. Sadly, that can take months. Just want this over with!
 
Sorry to hear this.
Hope you hear soon. The uncertainty must be hard.
 
Fellow long hauler here @ 15 months. Sorry to hear you are still suffering with issues after all this time! For me I find it very frustrating trying to find answers as it is not an issue of not "trying" hard enough with exercises etc.

Sorry if I have missed it but I was wondering how the issue with the knee not tracking properly was diagnosed?
 
From an x ray taken from above the knee bent to 90 degrees, it’s very obvious from that view but not from the front of a straight leg, nor from the side of a slightly bent leg. Now that I know that, I can see the lump myself, over to one side. It also explains why I sometimes feel that a rod has been inserted through that side of the knee and it doesn’t want to bend, it’s the kneecap jamming on the implant.
Sorry that you are also having problems. I recognise that frustration that you mentioned. I’m on surgeon no. 4, who finally took me seriously and actually bothered to find the cause of my problems and not just assume that my quads needed more strengthening. I’m still awaiting a SPECT scan to discover whether the implants are rotated, as there was nothing wrong with my kneecap in my old knee!
I’ll find your thread and read it.
 
WFD said:
@Ghostpipe , have you considered getting a test for metal sensitivities?
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Ghostpipe said:
Two years of inconsistency, discomfort and downright pain, and I have finally faced up to it and been to see two knee specialists who do lots of revisions. Now I can see what is causing the issues.
“Good” knee, any weight on the bent knee hurts, eg sit-stand, stairs, squatting etc. I can live with that, albeit disappointed, because it functions well. Turns out that my patella is grinding on the implant, and I now have cysts on the patella. Solution, a patella button, which would have no guarantee of success, and perhaps should have been done at tkr time as it is not an easy procedure to do afterwards.
“Bad” knee, patella sitting on top of the lateral side of the implant instead instead of tracking in its groove. Grinding on the implant, ditto above, plus it jams up suddenly with exercise. Solution, possible revision, but two different opinions on approach. This knee has been a problem since day one, now I know why.
The alignment of both implants is off, but not massively so. Can see now why I have shin pain laterally with one and medially with other, ties in with the differing alignment errors.
Both surgeons want scans to ascertain whether there are rotational errors with implants, and to make an accurate diagnosis before recommending courses of action. This means flights, car hire for me.
I am dispirited, and wish that I had researched my os more thoroughly, although a friend of mine has a successful outcome on a bilateral by the same chap. Is this life changing procedure just down to good luck?
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Sorry to hear you're going through this. I'm having similar problems. I reslly hope you get things fixed. Is the SPECT a rotational CT scan?
 
SPECT scan is a nuclear scan using special equipment which produces 3D pictures of tissue and bone. Hopefully my surgeon will find some way of fixing things without a revision after this.

I don’t have a metal allergy, because I had bilateral TKRs and one would be ok if my OS had resurfaced the patella.

Sorry to hear that you have problems too. It’s a comfort to know that others are in the same boat and to share experiences. And inspiring when someone finally achieves success after going through a tough time.
 
I have the results of my SPECT scan.
Bad left knee- both components rotated to different degrees. Tibial component loose. Maltracking patella getting damaged as a result, with cysts underneath.
Better right knee- patella has cysts underneath and is grinding on the implant.
Revision of left knee necessary and patella button on right.

I am terrified of a revision.

I am relieved that my concerns that something is wrong have been validated after 2.5 years of pain and all the associated mental anguish.

I am furious that I have been told that nothing was wrong, I had “high expectations” of my TKRs, and that doing loads of leg lifts would sort out my left knee.

Wish I could find some reports of revisions being successful and people being able to return to an active life thereafter.
 
Ghostpipe said:
I am terrified of a revision.
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What are you most concerned about? At least now the problem is identified and you can move forward.
Ghostpipe said:
Wish I could find some reports of revisions being successful and people being able to return to an active life thereafter.
Click to expand...
Click on this link and you will get a page with all the revision TKR threads. Lots of success stories and in most every case these members are no longer posting as they are off living life again.
 
My biggest concern right now is trusting a surgeon, or rather trusting my judgement in finding the right one. After all, I didn’t do too well first time round. I have trawled through the NJR and have picked one of two that I consulted that does a lot of revisions, but there are some 2500 of them in the area in which I am looking. Also, they may do a lot of revisions, but what is their success rate? No way of telling. It’s a giant leap of faith.
I have looked at a couple that people have recommended, but according to the NJR, they don’t do as many revisions as the one that I am with so far.
 
@Ghostpipe Where would you be willing to travel in the UK? I might be able to recommend a couple of surgeons.
 
Anywhere in the South East, or southern midlands. I can’t seem to find anyone who labels themselves as a revision specialist, nor any that seem to perform the great numbers that the American specialists do. I can’t afford the American ones!
 
I can totally relate as I'm in a similar situation. It's really hard trying to find someone who knows what's actually going on when you have a complex problem. I have also had the usual nothing's wrong on the X-rays and not actually listening to the symptoms and problems. It's good they've found the source of the problem now though so hopefully a revision will finally fix things for you.
 
Wonder if the Royal National Orthopaedic Hospital in Stanmore might be a good choice?
It is the National Centre for the UK and they must have revision specialists.
I think @Ayse is going there?
Another point which I would like to clarify with staff is what do the revision figures on the National Joint Registry mean?
Are they the number of revisions needed from that surgeon's figures or the number of revision surgeries he/she has done of other surgeons' work? Those are very different statistics. I couldn't work it out when I looked.
 
I assumed it is the number of those procedures that they have performed. It would seem that the only statistic of the results of their surgeries is the morbidity rate within three months!
 
EalingGran said:
Wonder if the Royal National Orthopaedic Hospital in Stanmore might be a good choice?
It is the National Centre for the UK and they must have revision specialists.
I think @Ayse is going there?
Another point which I would like to clarify with staff is what do the revision figures on the National Joint Registry mean?
Are they the number of revisions needed from that surgeon's figures or the number of revision surgeries he/she has done of other surgeons' work? Those are very different statistics. I couldn't work it out when I looked.
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Yes I've messaged @Ghostpipe about the surgeon I just saw.

I don't think you can tell from the NJR how many are revisions of their work or revisions in general.
 
And information on revisions is a surgeon NJR records are revisions they have performed. The numbers won't be huge as revisions are not the norm.

@Ghostpipe Stanmore is an excellent place to start. @Ayse Feel free to name surgeons on the public board. It helps other members who are searching for surgeons in the UK.
 
Jaycey said:
And information on revisions is a surgeon NJR records are revisions they have performed. The numbers won't be huge as revisions are not the norm.

@Ghostpipe Stanmore is an excellent place to start. @Ayse Feel free to name surgeons on the public board. It helps other members who are searching for surgeons in the UK.
Click to expand...

Thanks @Jaycey it was Jonathan Miles that I recently saw who does quite a few revisions.
 
HI Ghostpipe. I am sorry you are struggling so much i know how frustrating this can be. I had my partial done just over 2 years ago as well and i am still struggling with pain and stiffness although only in one Knee. I commend you on your perseverance and toughness.
Although further surgery looks daunting at least you have the answers to all your knee problems and are now back in control.
Not knowing why the pain is there and being told that there is no reason is worse.
You can now make a educated decision as to whom to choose and when to have the revisions.
I wish you all the very best and hope you come out with a far better outcome. You certainly deserve it.
 
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