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[REVISION TKR] Ouch...CRPS!<<.

Discussion in 'Knee Replacement Recovery Area' started by Jordon6, Dec 12, 2015.

  1. Jockette

    Jockette FORUM ADVISOR Forum Advisor

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    How cute! That is such a cute age.

    I struggle, too, with the length of this recovery. It will be a year for me on March 13. I am no where near recovered.

    Yes, I’m better than I was a few months ago, and my bend continues to improve, but I still have issues and some fears that something is not right.

    But then I read other threads and hear similar fears and I think we all just need to relax a bit and go with the flow and wait it out until our poor abused/traumatized knee sorts itself out. I think in many cases it will.

    You’ve had several surgeries so I’m sure you have more fears than I do, since you had to have a revision. That would definitely make me worry more.

    Try to hang in there. :console2:
     
  2. Spatz

    Spatz new member

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    I found that using stationary bike was a great way to strengthen my knee and helped greatly with flexion and straightening. Take it slow and start with about 10 minutes working to twenty.

    Don't forget ice and elevation. I has work for me.

    I have had a hip replacement 5 years ago and just underwent my second TKR ON January 15th. I may have to go for a revision of my right knee that was operated on 3 years ago as a bone scan indicates it is loose. Good luck and hang in there.
     
  3. skigirl

    skigirl SUPER MODERATOR Moderator

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    If your rom is 85 or less, a stationery bike will not work. Have you tried quad sets and maybe e-stym? It is electrical stimulation of the quad muscle to get it to wake up and do its job!! It would be hard to add PT to your life since you are already doing too much. I wonder if a wheel chair would help you a little and lessen some of the longer walks? Something to take the strain off your knee. What are you doing at home? I hope you are crashing into bed and elevating your leg.
     
  4. Pumpkln

    Pumpkln FORUM ADVISOR Forum Advisor

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    @Spatz ,
    Why don't you start a thread in the knee recovery forum and tell us about your recoveries.
    Starting a new thread and posting

    Please post your surgery dates for your right TKR and your THR, having the dates will allow us to better advise you.
    A moderator will add them to your signature for you, or you can add them yourself.
    How to create a signature
    Thanks!
     
  5. Jordon6

    Jordon6 member
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    @Pumpkln yes my ROM is 75 and it’s very difficult to ride the bike. I’ve tried all of my therapists have used estim and it’s just not working. I have MS and battle with stiffness anyway. Unfortunately my OS and neurologist both don’t have much knowledge about these challenges working together to impede my progress. I’ve searched online and only found one case of someone with MS and a knee replacement. There is a lady on this forum that had MS but she’s currently not active. I reached out to her, she nicely responded but no details about her experience.

    I am crashing at home in the evening but feel so guilty about it cause no one understands- my doctors, friends or family.

    I read a quote that said in part “...that the worse thing you can do to someone battling an illness is to make them prove their sick”

    That’s how I feel everyday!

    I appreciate all of the input and suggestions!
     
  6. Jockette

    Jockette FORUM ADVISOR Forum Advisor

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    That is so sad. I’m sorry you are made to feel that way.
     
  7. Pumpkln

    Pumpkln FORUM ADVISOR Forum Advisor

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    Jordon6,
    I am sorry to hear that you have not found someone who will work with your MS and TKR with kindness and understanding.
    Do what you can and do not let these people drag you down.

    Crashing at home at the end of the day with MS, that would be normal for some if not many individuals with MS.

    Is there a MS support group in your area? You may find someone who had a TKR or even a THR to ask questions. You can even ask them for PT recommendation with someone who understands MS and all the different ways MS can present.
    The local MS chapter should have links to a local calendar and support groups, on the National web site.
    Her is a link to the National support information. You could even call a navigator, there is a link on the page I am going to give you.
    https://www.nationalmssociety.org/Resources-Support/Find-Support

    Hope you get some rest :sleep: .
     
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  8. Jordon6

    Jordon6 member
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    Thanks @Pumpkln i never thought about inquiring at the MS support groups. Great idea! Surely someone else in the world has this similar issue! I can’t be the only one!
     
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    Last edited: Mar 1, 2018
  9. Jordon6

    Jordon6 member
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    I'm still having pain 8 months post revision! My OS really tried to discourage the idea of removing the scar tissue because he said that it will only grow back! He wouldn't do it but referred my to a fellow partner.
    That's not the answer I wanted to hear!

    I've read about surgeons using radiation and/or steroids to slow the growth of scar tissue. Does anyone have experience with this? And I need a local surgeon that has experience in arthrofibrosis. I tried calling Dr. Flandry in Columbus Ga ( who supposedly is excellent in scar tissue growth) but the phone operator said that he will not see me if I've had a revision. I desperately want answers but cannot afford or able to drive further than 30 min because of my limited ROM. Most research on Arthrofibrosis are old. I need to know what new research and procedures are out there that have worked.

    Has anyone had any experience with surgeons at Emory in Atlanta?

    Moderators- so that I get helpful feedback, please change my title to "Now...Arthrofibrosis!"
     
  10. Celle

    Celle FORUM ADVISOR Forum Advisor

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    'Tis done!

    @skigirl had a removal of arthrofibrosis. Maybe she can advise you?
     
  11. shelli22

    shelli22 senior

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    @Jordan6 I have just finished reading your thread. You’ve had such a monumental journey. I’m in Australia so I cannot give you any recommendations for your MS nor an OS close to you. I can, however offer you support as someone who has been on a similar but different 4 1/2 year looooong journey of PKR, TKR, arthroscopies, arthrofibrosis and revision TKR x 2.

    I have only one suggestion to offer your that’s slightly different to those offered before. I have a surgeon who listens. With this last TKR revision 5 weeks ago he has agreed we are doing nothing except ADLs and walking around the house. Any form of formal exercise results in scar tissue formation in those of us prone to this issue so the only answer is to do none - no PT and no exercises at home. To date I have refrained from doing any exercise at home and have only done ADLs and walking. I have been to the shop once, parked right outside and gone in grabbed what I need and left, that’s it.

    Before this revision I had lysis done 8 weeks prior. In hindsight I think it was too soon as I’m having huge issues with pain and need strong pain relief, understandable as my knee has been repeatedly traumatised.

    My suggestion to you once you have found an appropriate surgeon who can work both with your MS issues and your arthrofibrosis, is to consider taking an extended period off work. Perhaps long service leave or sick leave or annual leave??? I don’t know how all this works over there or if it’s even possible , wherever there is, but it’s just a thought.

    Your knee has caused you so much pain and stress over such a long period that I wonder if there is a way you can have an extended period off work, do a little as possible other than the stretching you need to do for your MS, ADLs and walking around the house, in an attempt to give your knee every chance to recover without all that extra stress from working 8 hours a day looking after small children, a very taxing job at the best of times. You’ve tried the alternatives so why not try doing the barest minimum, isn’t it worth a try to get your life back? I am putting my faith in the BoneSmart way and hope this time, I will get my mobility and therefore my life back.

    Anyway, just an option. Whatever you decide, good luck. I’m am here to support you as I too am long term sufferer with arthrofibrosis.


    Sent from my iPhone using BoneSmart Forum
     
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  12. Jordon6

    Jordon6 member
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    @shelli22 thank you so much for your kind words of encouragement! I have 10 weeks out in the summer so hopefully if I could find a surgeon to take me on, I’ll have time to recover. I truly believe that the constant push to exercise has caused me a great deal of problems! I read that 12 at weeks is the peak time for arthrofibrosis so maybe I need to take it very easy for 4 weeks and then some gentle stretches. My PT limits me to 40 visits and I pushed hard in the beginning fearing that I would exhaust my medical eligibility. Maybe I should start PT a bit later in recovery so that I can focus on icing and elevation in the beginning.

    Worth a try!
     
  13. Beckadeez

    Beckadeez senior

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    40 visits seems like an awful lot. I hope you feel better soon.
     
  14. SusieShoes

    SusieShoes FORUM ADVISOR Forum Advisor

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    The push to exercise causes a lot of people problems! So much pushing from “experts” discourages people from listening to their own bodies and instincts and leads them to over-exercise their healing joints. The over-exercising is what leads to hot, angry tissues and the actual formation of scar tissue. For some people, the push to exercise is a recipe for disaster.

    You have a better idea what’s going on with your knee than anyone else. Taking it easy for four weeks sounds like a really good plan. At that point you can decide what kind of exercise program you would like to begin. In the early days of recovery, resting, icing and elevating will do you the most good.

    About gentle stretches... Gentle stretching is something you can and should do right from the very start. Gentle. Just a bend to the point where your knee says “Enough.” Just straightening and testing the stretch until the knee says “Enough.” You can do these in your hospital bed. You can do them anywhere. Just a few here and there. You’ll know it’s good because it feels good.

    Some PT outfits will want to bill all the available insurance hours. Mine was like that. I liked my therapist, but he was most interested in getting me to sign on for more PT even when I didn’t need it. My flexion was 120, I was walking normally, and even my OS said I didn’t need it. “But your insurance will cover 20 more sessions,” my PT insisted. That’s like saying you have a full tank of gas so you might as well drive around until it’s gone.
     
  15. shelli22

    shelli22 senior

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    I think your plan of taking it easy for four weeks, other than gentle stretching is a really good one. Once you have reached four weeks you can then re-evaluate your position. I say this because I’m now 6 weeks and the swelling in my knee has not changed since week two.

    I have decided I will not be doing exercise until the swelling subsides, probably not until way past 12 weeks. There is not point exercising and making my knee swell more as I don’t want to start on the slippery slope of swelling and scar tissue formation.

    But that’s my evaluation of my knee. Your swelling make have subsided so that’s an excellent plan. If it hasn’t then you can make choices. I am going to continue resting, icing and elevating the knee and using heat and gentle short walks for my sciatica, as I’ve never had such excruciating sciatic pain.

    Good luck with your search for a surgeon. I’ll be keeping an eye on your thread awaiting the good news that you have found one.
     
    Last edited: Mar 16, 2018
  16. skigirl

    skigirl SUPER MODERATOR Moderator

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    When I had a Lysis of Adhesions, my surgeon stressed and I mean stressed that if I exercised a hot, inflammed knee, I would be helping the adhesions to reform. I had 3 weeks of no exercise at all, just elevating constantly and rest. Then four weeks of very gentle stretching and leg lifts, quad sets, nothing weight bearing. I could not exercise until all swelling was gone from my leg. And, then, it was a very gentle start up. I also did walking and biking as main exercises to get the knee moving again. Be careful with a knee that is swollen. It does not even make sense to do anything that will make it MORE swollen.
     
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  17. Celle

    Celle FORUM ADVISOR Forum Advisor

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    Listen to what skigirl says! She knows, from personal experience.
    Yes! Over-exercising can definitely increase the chances of developing arthrofibrosis.

    My surgeon doesn't allow any PT at all for the first month after a knee replacement. He says your knee needs that time, to start on its journey of healing. For that month, we rest, ice and elevate our leg, and walk around the house.
    After that month, we just go to PT once every 2 weeks, where we are shown a few new exercises to do at home.
    His patients all do well and achieve good ROM, as I did, and he hasn't had to do a manipulation to help with ROM for the past 4 years, because nobody developed adhesions. I think that speaks for itself.
     
  18. Jordon6

    Jordon6 member
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    So in my latest notes from my surgeon diagnosed me with ankylosis not arthrofibrosis. He used the term scar tissue with me in the visit so I assumed it was arthrofibrosis. I googled it and they sound very similar.

    @Josephine help me determine what this means and what’s my next step. I’m in pain and have little quality of life.
     
  19. Josephine

    Josephine FORUM ADMIN, DIRECTOR Administrator

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    Jordan, I just read your thread from the start and find it a very challenging and problematic case.
    More than that, they are really just two names for the same condition. Medicine has a way of doing that!
    I've never heard of it for this. Only for Heterotopic ossification which is a condition totally unrelated to your situation. So don't go for that.

    The only thing I can think is to get you to answer my questions again!

    It would be very helpful if you would answer each one individually - numbered as I have done - in as much detail as you can then I'll come back as see where you are ....

    1. what are your pain levels right now? (remember the 1-10 scale: 1 = no pain and 10 = the worst you can imagine. And don't forget to factor in other forms of pain such as soreness, burning, stabbing, throbbing, aching, swelling and stiffness).

    2. what pain medications have you been prescribed, how much are you taking (in mg please) and how often?

    3. how swollen is your leg compared to these?
    ai63.tinypic.com_eta39s.jpg

    4. what is your ROM - that's flexion (bend) and extension (straightness)

    5. are you icing your knee at all? If so, how often and for how long?

    6. are you elevating your leg. If so how often and for how long?

    7. what is your activity level? What do you do in the way of housework, cooking, cleaning, shopping, etc., and

    8. are you doing any exercises at home? If so what and how often?
    This is the most crucial question so please help me by using the format I have left as an example
    (which means please make a list and not an essay!)

    Exercises done at home
    - how many sessions you do each day
    - enter exercise by name then number of repetitions of each
    etc., etc.

    Anything done at PT
    - how many times a week
    - enter exercise by name then number of repetitions of each
    etc., etc.
     
  20. Jordon6

    Jordon6 member
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    Yes @Josephine i will answer!
    1-Pain levels one at rest, five when walking, stiffness and throbbing while walking
    2-taking Tramadol (50 mg) as needed. 1000 mg Tylenol twice a day
    3-Swelling is still moderate but not squishy really hard especially around the knee, Knee shaped like a bowling ball.
    4-Range of motion, 70/75 flex and 5 extension
    5-Icing and elevation rarely
    6-icing and elevating about an hour when active
    7-Activity level-work 40 hours a week, Housework, shopping ,cooking three times a week
    8- No exercises at home, Deep tissue massage is once a week for 30 minutes. No more PT

    THANKS!
     

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