Bilateral TKR 2 years out and facing up to facts

[WFD]

@Ghostpipe , have you considered getting a test for metal sensitivities?

 

[Jockette]

I agree that it might be a good idea to get a blood test for metal allergies. I know how we do that in the US, I’m not sure how you would go about it in your area.

It might also be a patella problem, like you mentioned.

It’s so disappointing to go through this surgery and not get a good outcome.

 

[sistersinhim]

It's good to read that you are going to a revisionist. Something doesn't sound right with that knee. Each knee is different in this surgery, even on the same person, but not this much difference.

 

[Kandy]

@Ghostpipe , I have been reading your story today, from the very first post to today's post. You stared out with such hope and patience. It seems that the journey has taken the wind out of your sails. I am walking in your footsteps and don't have anything to draw upon to give you words of wisdom. But I encourage you to keep pushing for answers. See that revision specialist and hopefully he can give you answers. Please keep posting. Your resilience has been an inspiration!

 

[Jeaniesknees]

Hi Ghostpipe, our surgery dates were about the same and I hear you with the frustration! I am back in PT because my ROM isn't where I want it to be, and I swell up too) Today my bad knee only wanted to go to 118 with some pushing. My best has been 122. (before surgery I could sit on my heels) If I sit too long it hurts to stand up. I am pretty good with walking but I resemble a beached whale trying to do yoga. . I am unwilling to believe that this is as good as it will get.
Good luck with your knees!

 

[Rain Dancer]

I'm sorry that you are continuing to have problems. I am 14 months out and still experiencing issues, although things are starting to change. I have chronic inflammation, which definitely has affected my recovery. In the last month, I have seen dramatic improvement after I started taking supplements to target the inflammation--quercetin, curcumin, and Japanese knotweed. Within a day and a half of starting the quercetin, I felt a major difference. My flexion improved, and a lot of the stiffness went away. My gait showed definite improvement. I highly recommend the supplements if you think that inflammation is the issue. Good luck in your search for answers. I know that it is frustrating.

 

[kiwicurls]

Just be aware that curcumin can interfere with iron absorption. I became anaemic after a year taking curcumin.

 

[Layla]

Hello @Ghostpipe
I read on, Jazzerguy's, thread that you may be facing a revision and encouraged him to continue posting since you are interested in revision outcomes. I will leave you a link to other's that faced revisions and the progress they documented here. Best Wishes to you. Please keep us posted.
Revision TKR

 

[Ghostpipe]

Thank you, @Layla. I have read them all! I will update my thread shortly, as I am visiting a second revision surgeon tomorrow.

 

[EalingGran]

If you are not happy with your second opinion I would recommend my surgeon
His name is Alex Liddle- practises at Charing X and King Edwards VII in Central London.
He is an excellent surgeon who does revisions and has done a lot of research on knee replacement. He also has an excellent manner and explains things really well. His figures on the National Joint Registry are very good.

 

[Ghostpipe]

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?

 

[Jcx]

I must be having bad luck also. 16 months and still having problems. Waiting for a scan to see if they can see what is going on. Feeling pretty low at the moment. Went in for a LTKR to have more mobility but it is the opposite at the moment. Take care Jcx

 

[EalingGran]

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?

Sorry you have such disappointment with your surgery. I think it is probably a mixture of luck and research when it comes to surgeons. Definitely check out the NJR figures though for anyone doing a revision.
I wasn't aware of it before my surgery but now wouldn't let anyone touch my other joints without looking up their results.

 

[EalingGran]

Just another thought.
Newcastle has a great teaching hospital. Is it worth checking the NJR to find a more local surgeon who does revisions?
It's not just the cost of flights/ car hire to London but ideally you wouldn't want to have to fly or drive a distance post any revision surgery.

 

[Ghostpipe]

I live abroad. I have sought advice from U.K. surgeons because it is impossible to research reliably anywhere closer. Thank you for your input, but my family in U.K. are all in the south. The advice I have sought in in two completely different areas, but at this stage I wouldn’t like to say where. If I eventually get a good outcome, then I shall certainly pass on information!

 

[Rain Dancer]

I’m glad that you have found the source of your pain but sorry that you have issues with both knees. How frustrating and painful for you.

 

[Ghostpipe]

Thank you @Rain Dancer. Glad that you managed to get your issues sorted out. Some of us have become long term browsers and posters. I see that you can now get out of the car easily, I am still finding a spot at the end of a row and often getting out into a flower bed so that I can open the door wide!

 

[Ghostpipe]

Mods, please can you change the title of my thread to “2 years out and facing up to facts”

 

[Jaycey]

@Ghostpipe Thread title changed for you!

 

[Rain Dancer]

Thank you @Rain Dancer. Glad that you managed to get your issues sorted out. Some of us have become long term browsers and posters. I see that you can now get out of the car easily, I am still finding a spot at the end of a row and often getting out into a flower bed so that I can open the door wide!

I was thinking of you and the other long haulers when I was at PT this morning and wishing that you could get to the other side too. It is an indescribable feeling to have success after being stuck for 20 months. I will continue to send positive thoughts your way.