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Revision TKR Would like advice please, I think knee has moved

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Secretary rang this morning. She had got in touch with surgeon. They are trying to get the test results faxed over so that they can be discussed. She said not to worry about 12 March appointment. Sounds as if something will be sorted. She is going to ring back when there is any news.

Consultant is good but I could do without all the hassle re appointments and timing. Why can't they be straight with me and be realistic. Last time I saw the fellow in clinic ( in January) he said that I needed to see the consultant (another 3 week wait) and I guess it would have happened again. On hindsight I might have decided to find another equally as good consultant even if it meant travelling. With his other jobs he is hardly ever there and other patients have told me that they have been transferred to different consultants for their surgery.

Thanks Pumpkin I'm taking all the meds I can tolerate, resting and elevating as I do anyway and have been for almost four years now. Icing is difficult through the brace as it is a good insulator. Pain has dropped back a little although I didn't have a good early part of the night.
 
At last life is getting back to some sort of normality, though I know I am still very stressed, so I can catch up with you.

Has the pain in your leg improved? I wonder what you did to it? It's not easy to twist it or move it at all in the brace I seem to remember. Also did you get any positive response from your surgeon's secretary?

I can only imagine how frustrated you must be feeling about everything. I know I went through a stage of 'why me', but then I realised that it was me so I had to get on with it. Having said that I'm not at all belittling what you are going through - I didn't have nearly as many problems as you, and my infection and recovery ran the course it should.

I think about you often and wish life could be better for you. Linda x
 
Thanks Coppernob, still not heard anything from the secretary or consultant. Thought I might of heard today but nothing yet. He's not in clinic until April but he may be operating today as Monday is his surgery day. Pain is not as bad as it was. I took the steristrips off last night (2 weeks since surgery) and one area hasn't knitted together on the surface but has healed underneath. I'll just have to give it time.

I'm just frustrated. I don't sleep very well at night, trouble getting to sleep and then waking up every couple of hours feeling very uncomfortable. My pressure points (especially heels) and back hurt in bed and my leg hurts more. I think my foot twists and my leg can't follow if you understand what I mean and it puts pressure on where the knee should be. Although I've been told I can fully weight bear I have never been able to, it just hurts so much and doesn't feel right. I have to use 2 crutches the whole time or my wheelchair. If only someone could wave the magic wand and tell me what the problem is and the way forward!

We usually go away in the spring for a few weekend breaks but don't think we will be able to this year. The fear of the unknown hotels and whether I could cope at night. Mealtimes are hard especially if the cafe/restaurant is busy. I've only managed snack meals so far. My leg seems to get in the way around the table legs. I need a haircut, I haven't had it cut since October and will try and get in this next week. My highlights have grown out and the grey is showing. That will make me feel better.

Like you I realise that I have to get on with life the best I can. Some days are better than others. The 'why me' does pop into my head at times. I think I am coping better at the moment but I don't like all the delays. Thanks for asking.
 
Still not heard from consultant's secretary. It will be 14 weeks from when the knee came out on Monday and 3 weeks from the tissue sample. It looks like I'll have to wait until the 12 March for the test results. Scar is healing nicely now. I don't think the glue worked very well, it is a good job I had steristrips as well. Scar is 3 inches long and the 4th time the same incision has been used.

I'm trying to get on with my life. I've started taking antihistamines again in readiness of the hayfever season. It usually starts affecting me in March. Surprise, the antihistamines have had a positive effect on the pain and swelling again just like they have in the past. I've stayed off them since the end of the hayfever season last year so that they wouldn't interfere with any tests that were being carried out.

I think about the knee fusion that was sugested twice and I positively don't want to go down that route. If I have to live with the pain, I'd rather have a bending knee than one permanently straight with all the drawbacks it presents. How I long to be able to get comfortable in bed and lay on my side. I'm still having problems with my pressure points especially my heels. I long to be mobile too even if it is only using my mobility scooter which I can't use at the moment.
 
So sorry this is all still on-going for you. Not long till the 12 March now but that's not much consolation when you've been waiting so long already. I understand about you not wanting the knee fusion. You need some answers before you even start considering that I would have thought. Still thinking of you and praying for you. Linda x
 
Hey Lizzie. Missed your post yesterday and read with absolute dismay this morning. Playing the waiting game has to be so frustrating and scary. You are in my thoughts and prayers that you get to the bottom of this with answers you want! Off to Sunday mass....it can't hurt! Keep us updated. Big HUG! Anne
 
I just picked up on your thread and I am amazed at how much you have gone through and how well you are handling the frustrations. You are a remarkable woman. Give yourself tons of credit. I hope you get some answers soon and can move forward and get a functioning pain free knee. Lee:console2::flwrysmile:
 
Thanks for all your posts.

I had another blip last night. I'm on Fentanyl patch which I change every 3 days. Somehow I forgot to change it Friday night and realised last night and changed it just before bed. My pain didn't really change on Saturday so no clue I'd missed the change. But.....last night I had the jitters and shivers all night along with bad stomach ache, felt rotten and didn't really sleep. Fortunately it has worn off now. I'm so sensitive to any change in medications. It brought back an episode when I was in hospital with the original TKR when my painkillers were constantly given late. The night in question the 12 hourly painkiller was 3 hours late. The painkiller only lasted 8 to 10 hours normally so I was well over the time. Boy, what a reaction I had!
 
I got in touch with the consultant's secretary again yesterday as I hadn't heard anything. I got through 5 minutes before she finished for the day after trying lots of times. She was going to follow it up today.

I had a phone call this morning saying that the consultant wants to discuss the results with me. She wouldn't give me the results over the phone or say if they were positive or negative. In the end I said I would keep the appointment next week with his fellow just to get the results as the next time the consultant would be in clinic (as I knew) was 9 April. I pleaded was there any other way to get the results and she said no. I discussed the timing for a further op if necessary and she said she was going to get in touch with admissions and come back to me. I was already way past the timing they originally gave me.

A short while afterwards I had another call from her saying the fellow was in her room and I really needed to see the consultant but he would speak to me if I wanted. He was very vague and cagey but said that I didn't have a true allergy but a low grade foreign body reaction. He didn't actually say it was to the cement but he would not elaborate. He kept saying I needed to discuss it with the consultant to every question I asked. He said he would still see me next week if I wanted. I said would he discuss it or tell me any more and he said no. So next week's appointment is cancelled.

I spoke again with his secretary. The consultant is on holiday for 2 weeks but she is trying to get me in on the 24 March, his operating day, between operations. She is really good.

So now I'm going to research 'low grade foreign body reactions'
 
Hi Lizzie. Good news that you will be able to meet with consultant sooner!! To me 'foreign body reaction' sounds like another way to say 'hypersensitivity' which you already know. Hope you get satisfying answer on 24th. And I'm sure you'll get some direction from knowledgable members on this forum. Sending positive thoughts your way! Anne
 
@spinfanatic the only two things that I can think the reaction can be to are the cement and the stitches. If it is the cement I'm guessing that any knee revision will have to cementless which he sees as a major problem. Everytime I've mentioned a cementless knee revision he has wanted to steer clear of it. If it is the stitches, who knows what I do then. The worse senario could be if I react to other materials used in the knee revision. I'm not 100% sure on the oxinium or titanium. It's only that the patch tests didn't show up reaction but the dental series didn't. I guess PMMA would have been in that series. I was tested on two types of stitches as well. Skin reactions are totally different to tissue reactions.

I had to go on insulin after a steroid and hyaluronic acid injection in my knee over 3 years ago. So I guess steriods are out. I have other autoimmune conditions. I saw an immuniologist a couple of years ago at Salford and didn't get anywhere. My GP found out afterwards that I was outside her specialisation. I'd waited months to see her as well. I have drug sensitivities as well. I'm usually not too bad the first time I use some new drugs, but if I stop and then restart them after a break then I react to them more.
 
There has been some discussion on this in the JBJS but it's one of those very new opinions which is still being discussed. Some dispute it much like they po-pooed repetitive strain injury and fibromyalgia some years ago. Both those are still not defined as actual medical conditions yet patients are frequently given the diagnosis still. I had one in my clinic only last week.

I'd be interested to see what Orthodoc has to say.
 
busylizzie said:
low grade foreign body reaction
Click to expand...

This could potentially mean many different things. I would consider this in the same category as the "allergies" to metals/cement. This has been discussed on this forum several different times. I don't think it is worth while "googling" this term as you will find too much variation in what it means. We are truly only at the beginning of understanding how allergic reactions to metal/cement can influence the outcome from joint replacement surgery. I hope you get a more definitive answer when you talk with the OS more directly.

Orthodoc
 
Thanks for your comments. I guess that I'll have to wait to the 24 March. I've had the appoinment confirmed now.
 
Sorry you have such a wait, glad the appointment is confirmed. I hope the OS has some answers and a direction for you to proceed.:SUNsmile:
 
My knee is just as painful. Everytime I think I'll ignore it and get on with my life I'm reminded that it is still there and stopping me. I've had back ache and sciatica the last couple of weeks also.

Counting the days now, one week left now to wait to see the consultant. Keep thinking what he is going to say. I keep thinking about the fusion he has mentioned and offered twice before and hoping that it is not the only option on offer. I really don't want it. It will be with external metalwork, no pin if it happens. I've read up on the froum about others with a fusion. Also thought about immunosuppressants. I will need a stoma operation sometime in the future. I'm wondering if my body doesn't like any foreign body. How will I go on with a stoma, will my body not like that either?

I know I should just wait for the discussion, but 6 weeks is a long wait just to see the consultant. I'll have to be patient and wait to find out the results and not second guess what the foreign body reaction is to, and how relevant it is, that's if they know.
 
Sorry to hear you knee is so painful:sad:, it does wear you down. Glad your appointment is coming up in a little over a week! Hoping your OS has some answers for you.:friends:
 
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