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  • #674
    Karen Stevens
    Participant

    Hello Kayley,
    The MUA’s humm it left the surgeons wondering what is wrong with me as they said my knee with no trouble under general anesthetic could bend to 90,and they put me straight onto a CPM machine, which I was doing to 90 before I left hospital, and as soon as I was at home my knee seized.
    One of the physiotherapists had me on the CPM machine after MUA at 110 when I awoke from GA and I was on morphine and fentanyl

    The next time, another of the physiotherapists gave me a needle of fentanyl and proceeded to push my leg backwards from my sitting position and hold, pushing my leg at 83 degrees for two minutes. ( I cried in pain ) Then they sent me home saying I could bend it to 83.

    This time I am not on any pain tablets my GP has me on CELEXI 100mg x 2 a day I also take( 1 Centrum women 50+ and 1 Calcium & Vitamin D3 per day after Bariatric Surgery)

    I cannot sleep most nights and the only pain is sometimes a sharp twinge at the right side of my knee for a couple of seconds
    My knee feels swollen and numb and stiff only hot/warm (sometimes)and I too want to know why I cannot bend it. Your site this may answer my question.
    Kind Regards
    Karen

    #676
    Kayley Usher
    Keymaster

    Hi Karen,
    In my opinion your story indicates that your surgeons and physios did not understand arthrofibrosis. A joint will always have more ROM when it is being manipulated by somebody else, or by something else (like a CPM), compared to when you try to bend it using your leg muscles. You will also lose ROM after an MUA because the MUA tears tissue and causes tissue damage. This sets off the inflammatory response and the scar tissue response (fibrosis) that stops ROM. Some of this happens quickly, and some takes longer to happen.
    Because there is a new wound inside your knee from the MUA your body can make more scar tissue than you had before the MUA, and you can be worse off afterwards. I have not seen good evidence to show that MUAs help ROM long term in people with arthrofibrosis, and they can do a lot of damage.
    CELEXI is Celebrex, which is a NSAID. Celebrex and other NSAIDs are well known to significantly increase the risk of heart disease and stroke when taken long term. This is because they actually increase inflammation by preventing the body from making the compounds (resolvins) that resolve inflammation. In my opinion taking NSAIDs long term increases fibrosis, and people with arthrofibrosis should not take them for longer than a week. I have published scientific references about this.
    So, I suggest that you stop taking CELEXI. If you need pain relief I suggest Panadol, but never take more than the recommended dose.
    Why do you think that you can’t sleep most nights? Have you discussed this with your doctor? Sleep is essential for good healing.
    Does your knee look very swollen to other people, or only a little?
    I assume that your surgeon has checked for obvious problems like infection and has done scans to check that there are no mechanical issues like something broken?
    Best regards,
    Kayley

    #677
    Karen Stevens
    Participant

    Hello Kayley,
    Today I discussed CELEXI with my husband and I said I would as of today stop taking it (confirmation is good thank you)
    I have also looked into the blood test for inflammatory cytokines with NutriPATH they were most helpful. I have seen the after scans and there was no mechanical issues and they tested each time for infection none found. My knee is very swollen looking to my other I will send you an e-mail with a photo just taken. I dont know why I cannot sleep., I just passed my units in semester 1 at university.

    Kind Regards
    Karen
    Please use the photo if needed

    • This reply was modified 11 months, 4 weeks ago by Karen Stevens.
    #679
    Kayley Usher
    Keymaster

    Hi Karen,
    Thanks for the photo, yes, your knee is swollen, which indicates ongoing inflammation. Even knees with less swelling than yours does can have significant inflammation.
    I’m glad that you’re discussing the Celexi. I can provide information but not medical advice, as I’m not a clinician.
    I’m also glad that you’ve had the tests for infection and mechanical issues.
    There is good evidence to show that mindfulness and meditation reduce inflammation and benefit health and sleep, and I will write about this at some stage. I have read that an independent review found Headspace was the best rated app for meditation, however, I’m not familiar with it. Some people find yoga, Qigong and similar mindfulness practices helpful, although people with AF may find some of the movements are not possible.
    Perhaps you would be able to hire a CPM for a while? Some companies hire medical equipment like this, but it can take work to find them.
    All the best,
    Kayley

    #680
    Karen Stevens
    Participant

    Hi Kayley,
    Thank you The CPM machines are too expensive to hire as well I have looked into that. Headspace is for those who need help for mental health, of that I really dont need. I need to be able to bend my knee to drive the car and help my husband who is a strong partner and has some health difficulties of his own. I have been searching all day for a orthopedic who specializes and who can help me, with only the results so far with private health cover, which we dont have.
    Thank you
    Kind Regards
    Karen

    #681
    Karen Stevens
    Participant

    PS The head space is probably be good for those who stress which is not part of my make up. I find that each part of life is like you have spilt the milk …..get the cat.

    • This reply was modified 11 months, 4 weeks ago by Karen Stevens.
    #683
    Kayley Usher
    Keymaster

    Hi Karen,
    You have a great approach to life! You sound very pragmatic.
    I do understand how frustrating and limiting not being able to bend your knee is.
    I’m not familiar with Headspace, but the evidence suggests that when performed correctly mindfulness and mediation benefits most people, with the possible exception of people with schizophrenia. If you’re a relaxed person you may find it easier to focus on your breathing or something else, and you may not need an app to help you to learn mediation.
    A surgeon who knows about the pathology of arthrofibrosis is likely to refer you to a rheumatologist. Many surgeons will be happy to do more surgery, but in my opinion this is not necessarily the best option, especially while your inflammation is high, because arthrofibrosis is an overly enthusiastic response to a wound, and surgery makes a wound. Your experience with your last surgery will be some guide for you. Did your knee become better or worse after it? Unfortunately, there are no easy answers.
    Best regards,
    Kayley

    #711
    Mike Flynn
    Participant

    Hi Kayley

    I recently visited my Physio and talked to him about the CPM. He was not greatly supportive, saying “they” had abandoned it’s use years ago. He advised me to go back to the exercise bike and just rock the knee backwards and forwards – not exceeding the comfortable limits, as this in effect is a CPM.

    I also had a second opinion with another surgeon to get his opinion. He was honest and told me there were no guarantees with a “revision” as I have a tendency to scarring – indicated by Dupuytrens. He said an arthroscopy to debride the scar tissue was not possible as there was no space available, and he would have to completely open it up again to remove the tissue. As you said, surgeons will always “have a go” – but no guarantees. He noted that I advised him my extension had improved, and then considered it could take up to 18 months for the knee to reach it’s best – my words, not his!

    I went home and tried the rocking motion on the bike as suggested by the physio, and found it a bit tiring and boring sitting in the lounge on my bike, so probably did not give it a fair go. But, I have been doing it several times a day for 10 – 30 minutes. I have not seen any measurable increase in ROM.

    You may recall I mentioned I was a keen bike rider and was missing the rides and mateship of the group I rode with. I have also been putting on weight, whilst sitting around! After a discussion about this site, the surgeons position and the physios advice, over a glass or two of red with friends, one of them suggested a shorter pedal arm. It did not take me long to determine that would not work due to by limited ROM that could not lift above the centre axis of the pedals. However, I felt there was something in this idea, and started investigating bike pedals and pedal arms for disabled persons on the internet. And, then I found it. A Hase Pendulum Pedal Arm. I found one available from a retail store in Canberra, ordered it and received it yesterday. It took only a few minutes to fit up, and I just re turned from my first ride in 12 months on a high!!! I now have a bike I can pedal and a CPM – all in one device.

    As the pendulum pedal has three settings, (depending upon limitation), I am able to set it so I do not exceed my current ROM and remain comfortably within my limits without pain!! However, I was out of breath this morning – it will take some time to get back into condition.

    I will return to my physio this week to tell him about it, and I would appreciate your view on this initiative. Without your suggestion about the CPM, I might never have achieved another ride.

    I also have opinion from another surgeon on the 15th of September, and will let you know how it goes with him.

    Appreciate your advice.

    Regards

    Mike

    #725
    Kayley Usher
    Keymaster

    Hi Mike,
    How are you going? I’m just back from a camping holiday in the Australian outback, it was very relaxing.
    Yes, CPM is often not prescribed. The few good quality clinical studies that examine its use do so in the general surgical population, and not in arthrofibrosis patients, so the beneficial effects are washed out by the large numbers of people who don’t need to use it. In addition, I believe that CPM is not used frequently enough, or for long enough, in these studies for sustained benefits.
    I need to clarify that “passive stretching” is stretching that does not activate the muscles of the limb being treated. If the muscles are activated this is active stretching (equals exercise), and unfortunately exercise is well known to generate inflammation. However, each person’s inflammatory status will be different, and given your medical history, your AF drivers may be different to the typical inflammatory drivers that involve chronic inflammation. The amount of pain is a guide to this. Perhaps your AF drivers are more to do with collagen production or turnover and you might be able to exercise more than many people with AF are able to.
    In any case, I suggest that you take the bike riding very slowly and carefully. It is very easy to overdo exercise and end up worse off. However, if you find that your pain and ROM are not negatively affected by your bike riding, then that’s terrific! The riding most likely won’t improve your ROM unless you are stretching the knee to the maximum (pain-free) amount on every cycle, and gradually increasing this degree of ROM, but movement is healthy. For those in the situation where they can safely ride a bike there is another pedal arm available called the Orthopedal, see https://www.orthopedal.com/
    If you find that your knee is worse after riding then you should still be able to exercise the rest of your body safely to gain the benefits that brings.
    It will be good to hear how you’re getting on.
    Best regards,
    Kayley

    #732
    Mike Flynn
    Participant

    Hi Kayley

    Sorry for the delay. I have been a bit busy. I trust you enjoyed your break.

    I have now been riding on and off for three weeks. I am not suffering any p[ain, reduction in ROM, or additional swelling in my knee – good result, so far. I am unfit and it is taking me some time to get back to my pre-TKR level. But, no rush, at least I am out riding again with my mates. It is a great feeling of freedom to get on my bike and just ride! I am having trouble with grades/hills, but I believe this to be my fitness level, and I will just continue without straining it.

    I looked at the Orthopedal on line but that one would not work for me as it appears to require full rotation above and below the centre axis of the pedal crank. With the Pendulum Pedal, I get full extension at the bottom of the stroke whereas the top of the stroke allows my foot to just reach the centre axis of the pedal, and does not strain my knee beyond its current limit. The pedal has three settings that I believe will allow me to increase my movement as I reset the pedal in time. It has two adjustment points – one on the pedal arm that allows the pendulum pedal to be clamped at any point on the arm – one of three holes where the pedal can be screwed into the arm to suit the user. Adjustment of both pointers should allow me to increase my ROM in time – perhaps??

    Changing the subject, I am suffering considerable pain from my lower back. I know I have arthritis in the spine but I believe the pain and reduced ability to bend (my back) without pain, is related to my limp/gait. After exercising my knee I can walk without much of a limp, but it soon tightens up and the knee ROM reduces, and I limp again. This very frustrating.

    I have an appointment with another knee surgeon in mid September. After listening to him, I will give consideration to my next move. I am leaning towards allowing one of these surgeons to open the knee up and removing the scar tissue. I know I went overboard after the initial TKR and was not adequately advised or guided on appropriate rehabilitation. I would prefer to be under constant supervision during the rehabilitation process next time. I will be making said arrangements prior to the next operation, but I am not sure if there is a rehab centre, with appropriately skilled staff available in Tasmania.

    Appreciate any comments with thanks.

    #733
    Kayley Usher
    Keymaster

    Hi Mike,

    Thanks very much for the update, that’s fantastic that you’re able to cycle!! That is really good news! The fact that this exercise doesn’t increase pain etc suggests that you don’t have active arthrofibrosis (which involves inflammation). It’s good that you’re taking the exercise carefully though.
    That’s really interesting about the Pendulum Pedal, I didn’t know that. Maybe I need to add a new web page for things that people have found to be helpful. What do you think?
    Regarding your bad back, myself and many people I know have back trouble, and have found the a stretch in the McKenzie method transforms a really bad back into a normal one – so long as the stretches are done every day. I make them part of my normal daily routine, like brushing my teeth, and it only takes a minute or two. A friend recommended the book to me years ago, see https://www.mckenziemethod.com/products/pain-relief-self-treatment-books/mckenzie-method-treat-your-own-back-book/ If you go to this link you can see the book is open to a page of showing the stretch that I do, I don’t worry about the other stretches.
    Regarding more surgery, I do have a cautionary approach. Surgery does help some people, but since you have Dupuytrens the scar tissue is likely to return. In addition, there is an increased risk of infection because you have a prosthesis, and of course there is always the risk that your arthrofibrosis will become active due to another injury (surgery), and you could end up much worse off. If I were in your position I would keep riding your bike carefully and within your limits, and yes, I do think that over time you will slowly increase your ROM. Because your inflammation appears to be under control, your body should be able to slowly break down the scar tissue. However, there is always the question of how your Dupuytrens will influence this process – that is an unknown, at least to me. A rheumatologist my know more about your response.
    Also, to be frank, I’m not aware of a rehab centre anywhere in Australia that is knowledgeable and experience in treating arthrofibrosis. This is a very rare thing anywhere in the world.
    I look forward to hearing how you go.
    Kayley

    #833
    Mike Flynn
    Participant

    Hi Kayley

    Just a further update on my condition and my attempts to improve. The bike riding with the Hase pendulum pedal is great! I am slowly regaining my fitness and I lost the few extra kilos I was carrying. I have also adjusted the pedal position several times in an effort to give me more “drive” with my left (TKR) leg, and, with increasing the seat height, I am now getting much more acceleration and consistency on hills. I have found very minor adjustments of height and pedal setting can make a lot of difference.

    I purchased a CPM machine from a Queensland based (medical equipment hire) business that was closing up – apparently due to Covid. It arrived last week and I am using it for a few hours per day. I initially thought it was a “miracle cure” and could walk down a couple of steps like normal knees allow, however, after my initial elation, it is really no better. (That reaction is fairly typical of me.) I will continue with the CPM a couple of hours per day – settings at 0 degrees extension and 71 degrees flexion. I tried to increase the flexion, but that is my limit at this time.

    I have a question about Xiaflex injections. These are used to treat “scarring” in patients with Dupuytrens and Peyronies diseases. It apparently breaks up the lesions/scarring. Could injections of Xiaflex work on the scar tissue in an arthro fibrotic effected joint (knee)? I have read that the injections are administered into the offending finger etc, and then 1 – 3 days later, the doctor “manipulates” the digit and it breaks the scarring up, and relieves the effect.

    It seems to follow that this could work on a knee. I would be a very willing guinea pig for a trial!!

    Kind regards, appreciate any advice

    Mike

    #834
    Karen Stevens
    Participant

    Hi Mike

    Did the medical place have any more CPM machines for sale lucky you
    Kind Regards
    Karen

    #835
    Kayley Usher
    Keymaster

    Hi Mike,

    Thanks for the update, I really appreciate it!! Do you think the pedalling has increased your ROM? It might be difficult to tell the effects of the CPM apart from the pedalling. It’s great that you were able to get a CPM, and have the determination to use it.

    Could you please tell us the name of the company that sold the CPM, in case they have any more of them for sale?

    I haven’t heard of Xiaflex but it sounds like a very interesting possibility. I’ll read some papers and get back to you.

    Have a good weekend,

    Kayley

    #836
    Kayley Usher
    Keymaster

    Hi again Mike,

    I’ll summarise what I know about Xiaflex – well actually what I know about about collagenase from the bacterium Clostridium, as this is what Xiaflex is. As you know it’s a relatively new treatment for Dupuytrens and Peyronies diseases, which are related to (are forms of) fibrosis. It is currently being trialled for a couple of types of fibrosis and it is an interesting potential therapy, but comes with risks.
    PROS – being a collagenase (an enzyme that breaks down the collagen that makes up scar tissue) it will probably help to break down the scar tissue in joints, and increase ROM. This might help to settle the fibrosis down, but this is not known.

    CONS – 1. there is a lot of structural collagen in joints, including in tendons and ligaments, and there is a real risk that you could rupture one or more after treatment. Our 2019 paper on says ” collagenase may damage articular cartilage, ligaments and tendons, but trials show no negative effect on these structures. Repeated injections needed, increases ROM in shoulder arthrofibrosis. More trials are needed”. There is some recent research using rats that suggests that collagenase might prevent arthrofibrosis, but this is a different thing to treating established AF.

    2. Collagenase will create an inflammatory response, since both the collagenase and the resulting collagen fragments activate immune cells. As you know, inflammation causes fibrosis, and because the cells that make the scar tissue (myofibroblasts) remain, they may become more activated and create more scar tissue, in a similar way to surgery.

    I think that a procedure such as an MUA where the joint is forced to bend and/or straighten after a collagenase injection would greatly increase the risk of tendon/ligament rupture, and I feel that this would not be wise. MUAs are well known to cause this type of damage without collagenase treatment.

    Even if the collagenase injections worked (you would need more than one injection) there is a real possibility of the arthrofibrosis returning.

    Thanks for suggesting Xiaflex and sorry I can’t be more positive about it, maybe in the future there will be evidence to show that collagenases are safe and effective to use in large joints, and I would be very happy about that!

    Kayley

    • This reply was modified 8 months, 3 weeks ago by Kayley Usher.
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