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  • #58

    Hi, please introduce yourself.

    #296
    Kayley Usher
    Keymaster

    Hello and welcome! We hope you find this website useful. Please check back for updates.

    #298

    Hi Kay, it works! I got an email notification for your reply. Did my reply notify you via email?

    #428
    Masoud
    Participant

    Thank you both of you!

    #621
    Mike Flynn
    Participant

    Hi, I was referred to this site whilst on the Knee Guru Forum. I apparently have arthrofibrosis in my left knee following TKR (July 2020), MUA(2X – August 2020 & September 2020) and 2 days in a (manual) CPM immediately after the second MUA. My ROM is now +10/+80.

    I hope to learn from this site and other users.

    I will post full details of my experiences soon, and hope to get some advice on improving my ROM in the future.

    #655
    Karen Stevens
    Participant

    Hello
    I am in FNQ and
    2020 Feb TKR unable to bend since then 2 manipulation’s, in Oct 2020 arthroscopy and scar extension where they lifted the tendon. (unable to bend at all ) 4th May 2021 Total knee revision where they replaced the plastic in between and removed a lot of scarring . I am now trying to bend, I had to fight for pain killers , all on the right knee. Revision surgeon and physio can no longer help me (so they say) neither committed to what is happening. I cannot bend beyond 45. I cannot afford a CPM machine.

    #662
    Kayley Usher
    Keymaster

    Hi Mike,
    I hope you have found the website to be useful.
    Have you found any particular treatment was beneficial, or harmful? Did the MUAs improve your knee, or make it worse?
    Thanks,
    Kayley

    #663
    Kayley Usher
    Keymaster

    Hi Karen,
    I suggest that you ask your GP for a referral to a rheumatologist. You will most likely need to tell him/her what arthrofibrosis is, and perhaps this website will help with that. They should be able to do some tests and prescribe anti-inflammatory medications for you, there are some suggested in “Key Points”.

    An IAA member has also recently told me about a suggestion from their rheumatologist regarding low dose naltrexone. I have put a summary about this under “New Research”.

    In the meantime the most important things to remember are to try to keep inflammation as low as possible, which means not doing activities that upset it. I know that this can be very limiting. Keep icing and elevating, that really helps in the early stages after surgery. Movement is important though, which is where CPM helps. It may be possible to sit on something high so that your leg dangles and swing your foot back and forth gently. The danger is that you push too hard and upset it, this is easily done.

    As suggested in Key Points, fish oil tablets and low dose aspirin also help to reduce inflammation, but check with your doctor before taking new things, there may be interactions with existing medications or conditions.

    All the best,
    Kayley

    #665
    Mike Flynn
    Participant

    Hi Kayley I have been remiss in not putting my full story up. Here we go

    July 2020 Left TKR – as a result of arthritis degradation – however, as a comfortably retired 68 year olds I was still enjoying mountain bike riding (without pain) before the surgery. I was having difficulty walking more than 1 – 200 metres without limping. Immediately following the TKR the knee felt great and I threw the crutches away within a few days of leaving hospital. I completed all the recommended physio at home, and perhaps may have done a bit extra! However, the ROM began to reduce to less than 90 degrees. It also would not straighten completely.

    August 2021 – surgeon suggested MUA, and I agreed. Whilst lying on the operating table, he told me of the need to “push through”! I believe I had already overdone the exercises, anyway. I visited a physio several times, but did not see any improvement. In fact ROM continued to reduce.

    September/October 2020 – surgeon suggested another MUA and whilst hospitalised for two days, a CPM machine was strapped to my leg. After the operation whilst strapped in the CPM, my surgeon advised me to “get an exercise bike”, which I did. I was able to pedal it a couple of times but my knee ROM reduced, and it became impossible to ride. I made an appointment with another physio recommended by a friend who had two successful knee replacements. He explained a bit about the scar tissue, and the need to break it up over time. I attended sessions weekly for several months, and whilst it felt better when I left t h e appointments, it quickly deteriorated, to the pre-existing ROM – about 80/90 degrees. I was carrying out the recommended knee exercises daily between appointments.

    During this period I spent long periods (days/weeks) of doing very little activity – sitting watching TV/YouTube etc, and the once daily exercises. I also spent periods (days/weeks) doing exercises in pool therapy and trying to get back to “normal activity”, but failed abysmally. Neither strategy seems to have assisted my recovery.

    I have now made an appointment to see my friend’s (successful) surgeon for an opinion. That will not occur until September 2021. I have also requested assistance from my surgeon and he has referred me to a “brother” surgeon, who I is older, and more experienced. However, that was four weeks ago, and whilst I have called his office – no response yet.

    Historically, I am a fast healer. I also suffer from Dupuytrens contracture – a scarring disease in the hands. I guess I may have a genetic predisposition to heavy scarring?

    I believe I overdid my immediate recovery phase, throwing the crutches away and getting back to normal within days of leaving hospital, which may have extended the scarring process – exercising whilst still in the inflammatory stage. I then believe the MUA repeated this process as my knee may have still been in the inflammatory stage. And then, another MUA and the CPM machine for about 24 hours and riding the exercise bike further extended the scarring.

    So, that is 3 – 4 excessively extended scarring opportunities for my knee. If only I knew then what I have learnt since that last MUA/CPM.

    That will do me for now. Note, I am not necessarily going to let another surgeon cut into my knee, but my surgeon has suggested his colleague may be amenable to “redoing the knee replacement” and removing all the heavy scar tissue. I guess I can understand his theory, but what will stop it all growing back? Any suggestions gratefully accepted.

    Mike

    #666
    Kayley Usher
    Keymaster

    Hi Mike,
    Thanks very much for sharing your story, we can all learn from each other.
    I agree that you very likely have a genetic predisposition to scarring, given that you have Dupuytrens contracture. This is a fibroproliferative disorder of the connective tissue that involves myofibroblast proliferation, and the two are essentially the same process except arthrofibrosis affects a joint.
    I also agree that you most likely overdid the rehab exercises, this is very common unfortunately, due to the misunderstanding of surgeons and physios. I suspect that many people who end up with AF do so because they are highly motivated people who do everything they can to recover well, and do as they’re told after advice to “push hard” while exercising.
    The CPM should have helped so long as it was gentle, but 24 hours isn’t long enough, it needs to be used every day long term until the inflammation settles.
    I’m not a clinician, but in my opinion redoing the TKR would be very unwise. In fact, for you any more surgery could well lead to increased problems, but especially major surgery like a TKR that will cause major inflammation. In my experience surgeons will often suggest a replacement TKR to treat AF even when there is no indication that there is anything at all wrong with the existing prosthesis (such as a broken or loose component), not because there is evidence that it helps, but because it is something to do. And, of course, surgeons do surgery, that is their job.
    The fact that you’re a fast healer suggests that your healing response is where the problem lies, fibrosis is an overly enthusiastic healing response.
    If you’re able to hire or buy a second hand CPM and use it gently every day that may help with your ROM. You’re probably aware that stretching every day is one of the leading therapies for Dupuytrens. Other than that, try to do as many things as you can on the “Key Points” list and consider the diagram “drivers of arthrofibrosis”.
    All the best,
    Kayley

    #667
    Mike Flynn
    Participant

    Thank you for your suggestions Kayley. I am interested in your comment on the use of the CPM. I have now found several machines available on ebay. It appears they are all in the US. Are there any specific requirements or specifications I should be looking for in these machines?

    My current range of movement is from (about) 10 degrees (not able to get the leg straight) to, say, 40 degrees (before exercise) ranging to a “very tight” 80 degrees after exercise. Unfortunately the 80 degrees quickly reduces to 40 degrees soon after the exercising finishes.

    The form of exercise I am completing includes stretching the leg suspended over a gap from hip to heal in an effort to straighten the leg under it’s own weight, and then sitting on a table letting the knee bend from 40 degrees to 80 as it drops under it’s own weight. I carry out this process repeatedly over a 10 – 15 minute period, two times per day. This is the exercise suggested by my physio. I also use ice packs when the knee feels particularly tight – some days after sleeping awkwardly (apparently) causing pain and further reduced ROM first thing in the morning,

    Would you suggest this exercise regime is sufficient? I am fearful of overdoing it (again)! Or, can you offer other suggestions?

    Your advice is greatly appreciated. Mike

    #668
    Kayley Usher
    Keymaster

    Hi Mike,
    It’s great that you stretch twice a day every day! With all stretches (by any means) the initial increase in ROM is lost after a while, but the tissue contraction that had occurred during the period prior to stretching will be largely counteracted and the knee will more readily reach that better ROM again next time you stretch.
    The stretches suggested by your physio sound quite good because there is minimal muscle use and the knee is taken through a range of movement. However, the table exercise would involve using your quads to lift the foot back up to table height, which could be problematic, and for some people may be too much. If your knee feels more painful afterwards this would indicate too much exercise has been done.
    It may be difficult to do manual stretches gently enough so that there isn’t any tissue damage done. If you straighten (or bend) a little too much you can tear tissue, which you very much want to avoid. If you can do the stretches slowly and are very self-aware and stop each particular range of movement when you start to feel the tension then this may be safe and should help.
    A computer controlled CPM is finely controlled to within 1 degree, and the ROM setting is only increased by 1 degree after a number of repeats at each setting. So long as the maximum ROM setting is not made too high initially and the person stops when their safe ROM limit is reached it’s very safe. But computer controlled CPMs (rather than manual controlled) are needed for this precision. Optiflex is a good type of CPM, but I’m sure there are others. Another advantage of CPM is you can sit back and watch TV while you do the stretching!
    The knee pain may come from adhesions forming when your knee hasn’t moved for a while as you sleep. Then you move the knee, the adhesions are broken, and it hurts. Does this fit with your experience? Adhesions occur more when your knee is inflamed and the myofibroblasts are highly activated. Typically the problem is the worst after surgery, then tapers off with flare-ups after too much exercise.
    Kayley

    #669
    Mike Flynn
    Participant

    Hi Kayley

    Well it is early morning here and I have just got out of bed with a very stiff leg with minimal ROM, perhaps 5 degrees. I have just applied an ice pack and it still does not want to move. It took a while yesterday for it to free up, so I guess I will advance later in the morning (fingers crossed).

    After exercise, I do not feel pain. However, I am told I have a high pain threshold, and I may be overdoing the exercising without knowing it?

    Your comment about the quads is equally concerning as I am deliberately exercising my quads at this time. I was told to keep those muscles in condition as they assist the knee to do it’s job, and therefore I am doing as you suggest and probably causing damage!!! Wow, this is a complete minefield. I am way out of my depth, unable to determine when I go to far, if I am doing enough, if the exercises are appropriate, or if I can carry on with normal activities including gardening, mowing lawns, general handyman duties and working on my car – which was/is my retirement hobby?

    Anyway enough of my frustration. I will look closer at the CPMs available, looking for a computer controlled model as you suggest. I will also stop the quad exercise.

    To complete my story, in May of this year, I fell from a ladder (2.5 metres high), landed on the left side of my back, and broke 11 ribs on that side – the first bone(s) broken in my life of 68 years! I did not damage my left (TKR) leg in the fall! I still have some minor (I think?) pain on my left lower side when I move sometimes and when I breath deeply. I know this has increased the inflammation in my body, and may have affected my TKR leg.

    My leg is still stiff after writing this posting, so I will go sit on the table and see if it will free up.

    Again, thank you for your advice and time.

    Mike

    #670
    Mike Flynn
    Participant

    Hi again Kayley,

    It is an hour or two later, and the knee would not move after the table exercise, so I decided to apply a heat pack and warm it up before doing the table exercise again. It worked. It bent down to 75/80 degrees – about where it was yesterday.

    It was interesting to note I had pain that seemed to be inside and to the sides of the knee joint. And, I guess it was a tendon (or a section of the muscle) over my quad that was excessively pronounced and “holding the knee” that eventually relaxed and allowed the knee to achieve 75/80.

    I was told to use all my flexion as part of my exercise regime, and to walk deliberately with heal and toe movement of my foot as I walk around afterwards. Like an exaggerated version of walking. Is this a good idea?

    Thanks again.

    mike

    #671
    Kayley Usher
    Keymaster

    Hi Mike,
    Thanks for the update! That’s very interesting about the heat pack. It suggests that your lack of ROM is more related to collagen deposition than inflammation, although you will have some level of inflammation present. This also fits with the excessive collagen deposition in Dupuytrens contracture, and I believe that heat is used to treat that as well.
    When inflammation is high there are heat shock proteins produced and these contribute to fibrosis and pain. This is why icing is usually recommended in AF. But for you it seems that heat is a better option.
    Yes, it’s good to use all of your ROM when stretching, but gently. Everything to do with AF should be gentle! NO “pushing thought the pain”! The heal and toe movement of your foot is a standard thing that physios tell everybody who has had a TKR, it teaches people how to walk properly again and not to hobble. I think you’re probably beyond this stage.
    Yes, quads and the other leg muscles help the knee to function, but if you have high inflammation then it’s easy to make matters worse by exercising too much and increasing inflammation even more. The inflammatory cytokines actually cause wasting of muscles, so exercising can be very counter-productive on many levels. Each person has a level that suits them, depending on their own medical situation, so what suits one person may not suit another.
    Maybe you could keep a diary of your exercises (duration and intensity), pain and approximate ROM to determine what amount of exercise is right for you. The pain and ROM may not change immediately, but may reduce the next day if you’ve done too much.
    Yes, the inflammation from your fall would very likely have affected your AF knee since inflammatory cytokines enter the bloodstream. If you’re able to take daily low dose aspirin and fish oil (check with your doctor) then these will help lower systemic inflammation.
    All the best with your CPM purchase. Please let us know how things go.
    Kayley

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