TKR Everything Comes to She Who Waits

[new knee in June]

@patient 99
As per your request, a picture of me, notice how I have only 2 legs, am not brown
& hairy & don't bark
I am cooking a ham & then off to work ( I have tomorrow off, with pay )
Talk Soon,
Diana

 

[Pumpkin]

Dear Carol,
Glad to see you back! I have missed your posts, and appreciate all the support you have given me as I go through my journey.
Since I am on pain meds I am going to cut to the chase.
Ask Mr Butler-Manuel which revisionist he recommends for a second opinion, and will he refer you. (or what ever channels you have to go through in the UK).
It took me almost 2 years to find someone who identified my problem, and now I have a brand new hinged knee.

Happy Easter!

 

[judgar]

I was told by my Dr. It all depends how much they have to do when they get in there. If they had lots of scraping and cleaning to do, it takes much longer for the tight band feeling to go away. You're trying to heal and some of us heal much slower than others. I hate it when I see some one and they say you still having problems. You still have a limp. Well they should get one of these done and see what they have to say then. People heal at their own speed.

 

[patient 99]

Glad to see you back!

Glad to see me back! Holy Mother of God, what about YOU? You are home - step in the right direction. Are you doing anything different to first time round?

It took me almost 2 years to find someone who identified my problem

Chris, this truly amazes and worries me. Was an unstable ligament so difficult to diagnose? Presumably your leg moved in ways that it shouldn't? That must have been a clue. Anyways all that is behind you now. Hope you are getting some sleep.

That's an interesting idea about asking my surgeon to refer me to another for a second opinion. My initial reaction is that it sounds a bit cheeky - like I'm saying `I don't trust you'. I'll see what he has to say and if necessary I'll go back to my GP. I've asked Diana (new knee in June) to give me her honest opinion. Can I ask you the same question - do you think that as I've described it that there is something wrong with my knee, rather than just some folk get a better outcome than others. Perfectly understand if you want to give this a miss until you are feeling stronger.

Put yourself first right now. You have been through the mixer. Carol

 

[patient 99]

notice how I have only 2 legs, am not brown
& hairy & don't bark

What a relief. Brown's not your colour.

 

[Mutley]

Hello lovely Carol

Right, just remind me how long since your TKR op? I am now nearly 17 months post op & the ONLY thing I can say about this whole procedure is at least I don't have the bone on bone pain. I DO have issues with ROM which I'm told is 110 but I reckon is more like 100. I also have issues with the reduced use/movement...frustrates me to hell. I have daily issues with walking, I do it ( have to walk the dogs!) but my leg often feels like it doesn't belong to me. It's a log for want of a better word. Worst problem is the trapped nerve issue I have in the other leg which I thought was due to the spinal anaesetic but apparently the MRI has shown this is not so but I have a rather crappy spine & having the knee done has bought this dormant problem to the surface...great! So in answer to your question, in my case I'm having to accept this is as good as it's going to get, even though I DON'T like it :-( I do believe you should ask for a 2nd opinion, even if that means asking your current surgeon. Any GOOD surgeon will have no qualms about recommending someone else to take a look if they feel they did a good job 1st time round. I sometimes think this operation goes really well or totally NOT what we were hoping for :-(
Chin up & keep asking questions, and get that 2nd opinion.
Jaki x

 

[patient 99]

the ONLY thing I can say about this whole procedure is at least I don't have the bone on bone pain

Hello Jaki Hearing from you made me a bit weepy. It brought the whole sorry saga for the both of us into full view. Who would have thought we would still be having dodgy knee conversations at this stage of the game. I have nothing to lose by asking for a second opinion. I will do it. But I don't know what I would do if I was actually offered corrective surgery. Its as if I am in no man's land where my knee is bad, but not so bad that what to do next is clear. Hopefully I will get some clarity in the near future (don't laugh).

I don't recall you getting a second opinion on your TKR. Perhaps the nerve problems in your other leg took over. I was about to ask if you would consider getting a second opinion now, but I've just re-read your message where you say its as good as its going to get, so that means the answer is No.

May be this acceptance stuff is the next phase - the phase that isn't talked about that much. When all of the `you will get there' voices are long gone. Oh bum, mother never told me life could hurt. I fully intended to marry a prince and live happy AND PAIN FREE ever after.

Now I've cheered us up so much we may as well have a drink. Mine's a whisky chaser if you're buying. xx Carol

 

[Jamie]

I don't think you have anything wrong with your knee - as in loosening or infection. And I agree that it sometimes can take quite a while for that tight band feeling to go away. My knee is 13 months old now. Mine was an easy surgery and recovery, but I still had that tightness going up and down stairs right up until the 12th month....way longer than with my other knee that required more work when he got in there. Go figure.

It never hurts to go talk to someone else about what you're experiencing. But, I think you should have @Josephine suggest another surgeon to see rather than asking your current doctor for a referral. As I understand your health system, your GP would have to give you the actual referral anyway and you do risk impacting your relationship with your current surgeon....not to mention the risk of having an "opinion" given by a buddy of his. This rarely works out well.

 

[new knee in June]

@patient 99
I thought long & hard about your plight at work I learned a long time ago never to doubt
Myself. So, if you feel something is not right, who is anyone to say otherwise. Get a second
Opinion ( let Josephine suggest someone ). I have also never settled for anything in my life.
I am my biggest cheerleader & take an active role in my health care. I go in with my list of
Questions, check off the answers as I ask. I am a partner in my doctors care.
Also, I was thinking about your symptom of a pebble in your shoe, could you possibly have
Problems with your feet ?
I have given you my advice, ( you certainly make me think when you post)
Now, let's have that whiskey chaser
Sincerely,
Diana

 

[Pumpkin]

Carol,
I agree with Jamie, have Josephine give you the name of a revisionist. Then ask your GP for a referral.
If it hurts, something is not right.

This flexion instability I had appears to be hard to diagnose by a lot of surgeons. Not sure why, now that I have seen my revisionist in action, it should not be that hard.
My revisionist has great diagnostic hands, and trusts what he sees and feels when he examines your knee, not all OS or Dr's have this gift.
For me just having the answer has been very helpful for understanding my pain, and being able to limit activites that would flare up my knee.

Are you doing anything different to first time round?

Just sinking in that I am doing better this time around, less swelling, brusing etc. Also noticed I do not have to elevate my leg when sitting. So far this is going better this time, I know more, and am following the mantra.

 

[Bionic woman2]

10 years later BW emerges. lol Sorry, and I'm sleepy now so I'm just passing through.

I knew it wouldn't be right to be in the neighborhood and not say hello.

 

[patient 99]

@Josephine I would much appreciate it if you could give me the name of an OS so that I can get a second opinion on my TKR. Once I've got it I will go see my GP. She has arranged for me to see my original OS again in late May. I will ask her if that can be changed. Everybody seems to think its best to see someone new rather than go back to the man who did the surgery. BTW my original surgeon was Mr Butler-Manuel who practices at the Horder Centre in East Sussex. A man with a good reputation (as far as I am aware) and a very nice chap too. Carol

 

[Mutley]

Sorry Carol, didn't mean to make you weepy

I see now that your 14 months post op so really I think long enough to expect the healing process to have finished pretty much & 'normal life' to have resumed. Having said that, the extreme nerve pain I had in my thigh I thought was going to stay with me forever but bit by bit it got less & less & then one day I realised I wasn't rubbing my damn leg! My new knee is fine, there is nothing wrong with it & in the grand scheme of things this has been a successful operation. It's just my leg doesn't move as well as it did prior to the op Like I said, I've now accepted that this is how it is therefore I must 'get on with it' which I am.

Until you get that 2nd opinion you won't know if it is a problem to do with the actual replacement or muscle/nerve/tissue damage. Have you been sent for an MRI & if not can you not ask to be sent for one? I can't fault my surgeon as he's been brilliant. We have now parted company as due to the trapped nerve/back problem in the other leg I can't do the drive back down to Hampshire. I'm now waiting to see a new 'Multiskeletal' team here in West Sussex ( don't make me say Bognor Regis!) to hopefully get a fresh set of eyes look into sorting out the new problems! All the while I'm 'in the system' I feel like hopefully I'll get to the bottom of all this. Getting a solution will of course warrant a whiskey chaser for you and a good bottle of red for me!

Really hope you get the answers you need so you too can move on from this LONG saga & start looking forward to the future again

 

[patient 99]

Sorry Carol, didn't mean to make you weepy

Let's deal with the important stuff first. You look real glam in your updated photo. Your new life must be agreeing with you? OK now to business.

Your last message sounded a lot more positive (so I've blown my nose and stopped the blubbing). Seeing a multiskelatal specialist definitely sounds the way to go. Several people on BS seem to have had relief from steroid injections - the ones given via ultrasound so that they hit the spot. I read that some have worked for up to a year at a time.

You mentioned my having an MRI scan. Yes its one of the things I will raise. At one stage I thought it might not be a good idea given that it involves magnetic force, but I've been assured lots of people with metal bits have these scans without any difficulty.

You know whilst it might not always seem it we probably are in a much better place than say 6 months ago. I've never heard you say your TKR was fine, and as for the trapped nerve you are now about to see people who can actually help you. Brilliant.

As always thanks for popping up when I need support/good advice the most. xx Carol

 

[patient 99]

I don't think you have anything wrong with your knee - as in loosening or infection.

Hi Jamie, I agree. Infection has definite tell tale signs eg, hot to the touch, swelling. I don't have that. Loosening the same. The leg would feel unstable I would think. I don't have that. So a second opinion to find out what I do have has to be the way to go. Thanks for reminding me that Josephine is well placed to suggest a good OS. I've messaged her.

Today I am having a much better day. Had a walk in the park and it wasn't too uncomfortable - although I did wear my elastic support stocking. The extra bit of grip I get from the stocking makes a noticeable difference. I wonder if that is a clue as to what's going on? Even at 14 months post op it seems the ups and downs of this recovery are not behind me.

but I still had that tightness going up and down stairs right up until the 12th month....way longer than with my other knee that required more work when he got in there.

No logic. I recently read a BS message where the writer said that we weren't told what to expect post op. The more I think about it I can understand why. It seems just about anything is possible. My knee wasn't too bad prior to surgery, so you see why I thought it should be plain sailing. Wrong.

I am pleased that your knees are doing well. How about stairs now? Can you go up and down like a big girl? Carol

 

[patient 99]

I thought long & hard about your plight

Thanks Diana, bit of a one way street this! But at least you know your input is very much appreciated. I am on the case of getting a second opinion. BS is as good as having one's own advisers, similar to what Obama and Cameron have. Its cool.

You mentioned my feet. I wouldn't rule anything out, but as far as I know they are OK. I actually had a good day today. Its weird. Why is that when you make a firm decision to take action to get something sorted it instantly improves??????????? But I'm not getting too excited - I am well aware of the roller coaster that is TKR recovery.

Your approach to your own health care is stella - but I wouldn't expect anything less from you. Hope your ham was tasty. Carol

 

[Jamie]

I am pleased that your knees are doing well. How about stairs now? Can you go up and down like a big girl?

Oh yes. I'm a very big girl now. My only "problem" is that my muscles are not as strong as I would like and I still use the railing to balance when I'm on all but the smallest height steps. I will be starting back with my trainer soon to work on that. Every now and then I do the stairs with no holding on. I can do it, but I'm just weaker than I should be.

Hopefully you'll get some answers and you can also start working on a solution.

 

[turtle68]

Carol, Wow, have I missed you as have so many as I can tell from all the posts. It sounds like you and I are at about the same place. My knee has good days and bad days and it seems that as the swelling has subsided I can feel the loose pcl (posterior cruceate ligament), which the OS admitted was still "a little loose" when I had my one year post op. Meanwhile, I'm still recovering from the strength training class, where I think I really did a number on the soft tissue, and sometimes my leg feels like I'm lugging around a gallon of fluid.

That's great you're pursuing a 2nd opinion, and I hope you get some answers. You asked @Jamie about going up and down the stairs like a big girl. I can go up no problem but if I try to go down I can do it but pay a price afterwards. Meanwhile, I'm sticking to walking the treadmill daily, it seems to help.

@Mutley, it's so good to hear from you and you do look very glam in your new picture. Are you enjoying your new home. Like you, I've decided I must move on with it but I do think it wears me out sometimes. and what is a multiskelatal specialist? I'm not familiar with that term, it might be similar to what they call a physiatrist here who is a dr. who specializes in rehab. Last time I saw one of those he told me it was God working through him. That was after my back surgery. Rehab did help so it did work regardless of who was doing the work.

@Pumpkln - Glad your revision is done and hope you're progressing nicely. Which one of your ligaments was causing the problem? My PCL is still loose and I don't know what to do about it. I don't have much faith in physical therapists, so I guess I'll just keep on keeping on.

Carol, I know it makes it difficult for you because you didn't have the bone on bone pain for a long period of time. Like @new knee in June, I can look back on the time when I could barely walk and my leg would give out on me. Life is so much better now, but I can only imagine what it's like for you. I even whine on a bad day.

Diana, you're right Carol's posts always make us think and evoke very thoughtful responses.

On a bright note, we leave for Madison WI to see our grandchildren, son and his wife on Wednesday. Really looking forward to that. I was tempted to order wheelchair service because you get through the lines much faster, but I can't justify it, as I have no apprehensions about walking through Chicago O'hare airport.

Have a good week, all you all, and I look forward to hearing from you now and again.

Hugs and Bugs, Dorothy

 

[Josephine]

Carol, I started to read your thread right from the start to see if I could get a better line on it. I got as far as page 35 and had to stop as I'm running out of time! It's 9pm and I still have a day's work to do before bed time and working tomorrow! What fun! Anyway, one thing did jump out at me and that was, have I never suggested you see a chiropractor? I am thinking that a bit of chiropractic massage might well help that knee and it certainly won't do any harm!

@Josephine I would much appreciate it if you could give me the name of an OS so that I can get a second opinion on my TKR.

Certainly. I was trawling my list earlier today for someone else and the name Peter James jumped out at me. He works at the Queen's Medical Centre in Nottingham. Another is Andrew Porteous who works at Southmead Hospital, Bristol. Both a tidy way from you (Tundbridge Wells area, isn't it?) but might be well worth the trip.

Once I've got it I will go see my GP. She has arranged for me to see my original OS again in late May. I will ask her if that can be changed.

don't change it, just ring the hospital and cancel it.

Everybody seems to think its best to see someone new rather than go back to the man who did the surgery.

And I totally agree. It was something missing from the posts I read but then I only got to about August 2013!

BTW my original surgeon was Mr Butler-Manuel who practices at the Horder Centre in East Sussex

Yes I know - in 2012 he did 178 TKRs, 80 partials and 41 revisions. 299 in all! Quite a goer!

 

[patient 99]

@Josephine Thank you for the names. To read 39 pages of my stuff you deserve a medal. I know you have a chiropractor and swear by him. Will certainly consider it. Off to work today you said - I'm sure work, especially when you enjoy it, keeps you young. Carol