TKR Hello from the UK!

[Josephine]

My surgery is much like yours, Carol. Ring 8.30-9.30 and you can get an appointment in the daily 'emergency' clinic but it can be anybody. fortunately, I am okay with all the doctors in that surgery but prefer one who is now part-time and rarely does the emergency clinics. My second choice often does them so I can sometimes be lucky! They also have an 'emergency' clinic on Saturday mornings which is helpful too. However, from what I've heard, this surgery is fairly unique in it's patient friendly organisation!

 

[patient 99]

Hi Jaki, Are the family home today? I guess it can be a mixed blessing - good to see them, but then there's all the extra work.

Its alright for me to say `what's another week'. Its another 7 whole days of what sounds like terrible pain. Would you consider A&E?. 8am on a week day they can be quiet and not too busy to give good service. Its always best to arrive in an ambulance - you get straight through. But I know that's a bit OTT. My sister had a medical problem one time. She went to A&E by car. It was a busy week end. She eventually lay down on the floor. Said she couldn't move, and she was seen immediately. I'm sure Emergency doesn't just mean things like a heart attack. But I wont continue with this. I know you wouldn't go. You would think it was `making a fuss'. Its now less than a week to go, so that's something.

How am I? You know I don't honestly know. I don't know if I am just slow to heal or whether everything under the sun is wrong with my knee. A friend said to me that I was suffering from depression and that I was in denial. I disagree. You know that say `me thinks you do protest too much'. Its like the more the lunatic says I am not a lunatic, the more he is thought to be a lunatic. Jaki, as long as it doesn't hurt I don't care. xx C

 

[Mutley]

Hi Carol,
I drove to Heathrow & picked up hubby & girls. They have had a fabulous time & the banter in the car on the drive home was continuous! Matt showed me all the pictures he took this morning & told me a lot of the stories they had been told while in the Ukraine, Poland, Chenoble ( damn! Can never spell that country!) it's amazing & horrific when you hear the true accounts of these poor people & a real eye opener for my 2 girls.
Anyway, sort of good news to report. Haven't slept the last couple of nights but last night was possibly the worse since having the TKR
I'm now beginning to think that Josephine's suggestion of this being a " mild" case of CRPS ( & if it is mild I would REALLY hate to be going through an extreme case) could well be true. Too many random pains, aches, throbbings etc in too many places. At 3 am I had no choice but to take an Oxynorm or bad boy tablet as I call it & at 6.30 I was still awake & climbing the walls ( but now with a hangover type head & feeling very sick from the tablet) Managed to get a cancellation appt with the locum Dr. All she said was, " Sorry for the wait & what can I do for you?" And that was it! Couldn't speak a word. So when she said I hear your TKR didn't go to plan I thought KILL ME NOW! Think I should have gone on the stage after all! Anyway, basically told her what the problem was, was just a tad fed up & HELP! Have to say she was rather good. Very composed, didn't get put off by my runny nose & inability to speak only cry. So, she has arranged some blood tests. Forgotton what for but apparently if your in a lot of pain you have a raised something or other & it will show up in a blood test. She's doubled the dose of the Amitryptiline for a month as they are supposed to be able to help nerve damage. She asked me to get in touch with my surgeons secretary to see about getting my appointment brought forward with an x-ray so we can all rule out any potential problems with the new knee. Have done this & the secretary will call me back tomorrow after speaking to my surgeon. I'm SURE there is nothing wrong with the new parts but best to rule that out so she can then decide how we go about managing or should that say TRYING to manage the pain, bearing in mind I'm allergic to pretty much EVERYTHING.
SO, still in a lot of discomfort but a ball is being rolled, hopefully in my corner & therefore I can't ask anymore than that. Between you & me I don't think I COULD have waited until next Mondays appointment but at least someone would have rang for an appointment today & they also don't have to wait a week...just the 5 days
Like you say, it's the NOT KNOWING. Your knee could be totally on track for you, therefore you could be an impatient patient...just like I was. The thing is, you DO have to give it more time, maybe up to 6 months or maybe up to 12 months. Someone mentioned keeping a journal of achievements, no matter how big or small. I think that's a good idea, so if the are still more down days/dodgy moments to come, you can look back & be reminded that actually, this is what I've achieved. Even I'm going to read back through my own thread because regardless of my issues now & the fact my knee isn't as straight or has as good a ROM that I would have preferred, in the last 7 months I've been on quite a journey. Not too sure how or when it's going to end but I do know that me & my new knee will see it through to the bitter yet I hope SWEET end...Amen

 

[Josephine]

if it is mild I would REALLY hate to be going through an extreme case

That's for sure!

apparently if your in a lot of pain you have a raised something or other & it will show up in a blood test.

It's a crp test or C-reactive protein.

A high or increasing amount of CRP in your blood suggests that you have an acute infection or inflammation but it does not help in identifying its location or the condition causing it.

In people with chronic inflammatory conditions, high concentrations of CRP suggest a flare-up or that treatment has not been effective.

If the CRP concentration in your blood drops, it means that you are getting better and inflammation is being reduced. When your results fall below 10 mg/L (milligrams per litre), you no longer have clinically active inflammation.

 

[turtle68]

Jaki, Glad to hear you got in sooner with the dr. and they are paying attention to you and can get the problem corrected. You have been such an inspiration and good friend and I am keeping my best thoughts that you are going to get some answers. And, my dear friend Carol, I hope you get some answers and an MUA if that is what the dr. deems necessary. I'm so looking forward to that moment when we can all just get on with it and have our lives not centered around these knees. I've been packing up for the trip tomorrow, and I'm very nervous about the whole thing. Hoping to enjoy it but with only a 2 hour flight to Chicago and then 2 hour drive to Madison, it shouldn't be too bad. We chose to fly drive rather to change planes in Chicago, because that is such a hassle. On the way back, we're spending an afternoon and night with some dear friends who moved to Chicago a couple of years ago. Just rambling on here - will talk to you soon. My thoughts are with you.

Hugs, Dorothy

 

[patient 99]

Hi Jaki, All the chatter from husband and girls must help take your mind of you know what. So relieved that you are getting some attention at last. You may already have said it, and I've just missed it, but when did all these pains actually start? Was it all after the TKR? The timing must have some bearing. Does the OS just test the knee's hardware. I do hope not. Even with my limited medical knowledge, I can envisage a situation where the prosthesis shows up OK on an xray, but there are still problems with the soft tissue.

When you go to see him, or anybody else for that matter, I wonder if some one should go with you. With the best will in the world you cannot possibly be functioning normally. If someone accompanied you they could help ask the right questions that you might overlook. Choose this person well. You want more than a kind soul who will hold your hand. Sometimes I've come out of the doctors, and I can't remember a word they have said, because I'm too upset. All I'm saying is don't do it on your own Jaki, please.

It was me who said I had started keeping a record. It wasn't specifically to do with achievements - it covered the good, the bad and the ugly. I haven't found it that useful. It demonstrates what we already know ie, recovery is a roller coaster. But keeping it purely for achievements, might work better.

I went to Tunbridge Wells today. I put 2 hours worth in the meter. A bit disappointed when I could only manage an hour. I still get so incredibly tired. And my back aches - it never used to. At night I sleep for 9 - 10 hours. When I got back from Tunbridge Wells I had something to eat and went to bed for an hour. Again slept like the dead. I had to force myself to get up. I have heard about convalescing, but this is ridiculous. Prior to TKR 7 to 8 hours was sufficient. When you can't sleep at night do you get a chance to get your head down during the day?

I notice from your message that you are still having caring thoughts for others. Good, good. otherwise where would I be <wink>. But there is a time and place for everything. At the moment you gotta put yourself first. Am I coming across as parent to child? I do hope not. I don't like it if people are over bossy with me. I just want it to be OK for you. xx Carol

 

[Mutley]

Dorothy, have a lovely trip to Madison Just do everything you can to help make it easier on the knee. If you need a little walk around the plane, then do so & if you need your husband to stop on the drive from Chicago so you can have a stretch , also do that too! Most importantly have a FABULOUS TIME! Enjoy that catch up with friends & come back feeling like a new woman, relaxed & proud that you managed to tackle this trip so easily And thanks for thinking of myself & Carol too! Now you better go & finish the rest of your packing! I HATE that job I remember flying into Chicago once. One minute you were in the skies preparing for landing & the next minute you literally popped through the clouds & onto the runway! Safe trip my friend & we want to hear about it when you get back!

Carol, I'll be back later to reply to you too!

 

[turtle68]

Thanks for your good wishes. Had a good report from dr. yesterday, and so looking forward to this "normal" vacation.
Hugs, Dorothy

 

[Mutley]

Afternoon Carol,
Well, now I think about it the pain in m groin, or the snapping sensations was way before I even had the TKR. I can remember mentioning it to my surgeon & he was going to get my hip x-rayed & I told him not to as previously done.

Strangely, I was speaking to my mum last night & she had exactly the same thing with her groin. She also went into hospital about a year ago & had a deeply injected cortisone injection, which, touch wood, did its job. Her surgeon warned her it might not work or only last 1, 3 or 6 months. I'm going to mention this to my surgeon as possibly it could be this that is aggravating the thigh etc.

Directly after the TKR, I only had the outer thigh pain which was suggested could be the IBT bands. After the MUA everything went up a notch pain wise but have to say it's only been the last few weeks or so that I realised I had a few different areas that were being affected, 7 to be precise! At the end of the day I think the surgeon will only be interested in the placement &, like I mentioned before, I don't think there is anything wrong with it. It would be nice just for peace of mind to get it x-rayed & find out for sure. As for the other problems I'm assuming it will be down to the GP to determine what the problem is & how we go about finding a solution...

I always go to see my surgeon with a load of written questions! This time I will go with ALL my symptoms written down! I can hold my own but will be forceful this time as I had mentioned some of the problems to him last time & he said he didn't know what the cause of the pain was. Well this time I WANT TO KNOW...by someone at least!

How many weeks exactly post op are you now? I don't think I could have done more than an hour at your point of recovery. You have probably got backache because you are not carrying yourself how you used to. Maybe your gait is out of sync, that your walking with an " I've got an artificial knee" attitude & it's affecting your posture big time!

The bonus of your post is that you are able to sleep & you're getting lots of it! That's POSITIVE because imagine how you would be feeling if you weren't getting any sleep & was also feeling snappy & crappy during the day??? Well, you'd be feeling like I do sometimes!

I had 50mgs of Amitryptiline last night & was still awake at 4am. When I did get up I felt like a zombie for the rest of the morning. It took a hot Gregs sausage roll to make me feel a little bit better!!!

And for the record, you come across as another lovely forum member who's having a tough time but equally shows the ability to care about someone else. For that I will always be very grateful...

So pleased Dorothy had a good report from her Dr yesterday in time for her vacation today! Xx

 

[Mutley]

Well, I can't fault the service I'm getting from my hospital. I rang my surgeons secretary yesterday to see if I could get an appointment to see him. She has just rang me to say he is more than happy to see me & has fitted me in to see him next Friday. Better start writing out my list of "Woe"...again! Even if he says there is nothing wrong with the replacement at least he might be able to advise me where I should go next or who might be able to help me. Fingers CROSSED....

 

[patient 99]

Hi Jaki, don't know what is happening to the messages I am sending you. Some appear and some do not. I messaged you this morning,but there's no sign of it. When I write them for the second time they never read quite as I intended. Drat. In it I asked amongst many other things what an IBT band was. Did you get that? If not, I will send you another in response to `well now I think about it .......' Carol

 

[patient 99]

Hi Jaki, good news about the OS appt. I can cross my big toe on my right foot. So you cross your fingers and I will cross my right big toe and luck will be with you for sure. x Carol

 

[patient 99]

Hi Dorothy, what you doing on line. You are supposed to be on holiday. Hope the flight went well. Carol

 

[Josephine]

I always go to see my surgeon with a load of written questions! This time I will go with ALL my symptoms written down! I can hold my own but will be forceful this time as I had mentioned some of the problems to him last time & he said he didn't know what the cause of the pain was. Well this time I WANT TO KNOW...by someone at least!

Dear girl, we all want to know but remember that they are only human! At least he was honest enough to say he didn't know! And he might also genuinely not know whom to send you to for answers.

 

[turtle68]

The flight went well except being 2 hours late getting out of Houston. Did fine, not much more ucomfortable than any normal planeride. Do mis my temperpedic bed. Right now hanging out with sick sleeping grandaughter while hubby is off t pool with grandson. Beautiful weather - thet don't know hot here as compared to Houston. Hope all goes well with your dr's appointments Jakiand Carol.

Hugs, Dorothy

 

[patient 99]

Hi Jaki, I'll work on the basis that my previous message got lost in outer space. While things are far from right, from what you have said there would appear to be something positive. If your OS can confirm, what you believe to be the case, ie that your TKR is OK, that has to be good. The MUA may have aggravated an existing problem which is a shame, but it seems doubtful that it caused it. Its interesting what you say about your mum, again that could help clarify things. It will be good when you get the results of your blood test and your OSs input. Your GP could then have a diagnosis and offer you appropriate treatment sooner than you think. By the way what are IBT bands? Not being able to sleep properly is a real downer. I experienced it for about 6/8 weeks, and that was bad enough. I operated on a 24 hour clock and irrespective of whether it was morning, noon or night whenever I could sleep I did. Sometimes even 20min cat naps help. A glass of wine in a warm room around midday can usually be relied upon.

I'm 20wks post op today. Some days I think I will have to have the MUA others days I think may be I wont. But I am getting to be an old hand at this knee business. I just carry on and do the very best I can. But don't let this stiff upper lip stuff fool you. If it becomes a certainty that I have to have the MUA I will not be acting like Mrs Cool. I've heard you have to have your leg in a continuous motion machine to stop the scar tissue reforming. What happens at night? Is your leg moving all the time you are trying to sleep? No, no, I'm not going there.

As the weather is so nice I wanted to get out of trousers and where a dress for a change. But I've only got 2 frocks that are long enough to cover everything but my ankles. And neither of them are my favourites. Shoes are even worse. I go to the wardrobe select a pair, where them for about 20 steps, then put them back in the wardrobe. I then strap on my echo jesus sandals. None of these PROBLEMS were explained to me. Do you think I could sue.

Gregs hot sausage rolls do it for you eh? Snickers ice cream is my naughty treat. Oh and I am addicted to Waitrose honey coated mixed nuts. Those and a glass of wine around 3pm - heaven, I'm in heaven.............
Its going to be sunny again over the weekend. Anything planned? I don't actually like the weekend. Things close, like physio pools and its harder to get medical help if needed. The pubs are crowded and full of kids. There's queues to try things on in the shops. I like it when all the workers and children are in their rightful place - at work or school and I can have everything to myself. <chuckle>. I'm never going to get to heaven - even with my jesus scandals. Warm thoughts x Carol

 

[Josephine]

By the way what are IBT bands?

Try looking in the Library, Carol! ITB (ilio-tibial band)

I've heard you have to have your leg in a continuous motion machine to stop the scar tissue reforming.

No UK surgeon I ever worked with does that. It's mostly a US thing.

 

[Mutley]

No UK surgeon I ever worked with does that. It's mostly a US thing.

When I had my MUA my surgeon REQUESTED that my leg be in a CPM machine from point of recovery. However, the physio didn't read his written request & after spending 6 hours in recovery trying to sort out the pain & then going back to my room, there was no machine available. I can't help but think that if I had been given the CPM I might still have the ROM he managed to get my knee to which was 120. The CPM definitely helped mentally before having the MUA even if I was stuck at 80!

 

[Josephine]

The CPM definitely helped mentally before having the MUA

Which is about all they are good for!

 

[patient 99]

Hi Jaki, I do miss you.

Carol thoughts: tell her you have developed a deadly disease, and that you might only have hours to live, but that she is not to worry, not even a tiny bit. No, you can't do that! I can too. Best you take out the bit about `minutes to live', say hours instead, less dramatic - oh alright then. Has it ever crossed your mind Carol, that its lovely weather, Waitrose have an offer on stella and J might be chilling out instead of spending time chatting to you? Yes, it has crossed my mind and I hope she is. She deserves it.