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Awaiting revision and very scared

Discussion in 'Knee Replacement Pre-Op Area' started by tabbykit, Apr 19, 2019.

  1. tabbykit

    tabbykit member
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    Hi - have tried to fill in my info but says I am not authorised.

    I am 62, in UK, had TKR in 2015. Had poor recovery, mostly due to anaphylactic shock and severe allergic reactions to meds (only AFTER coming home and due to GP advising me to double the dose of Tramadol). It took 2 weeks to get over and during that time I was pretty much out of it and unable to do physio.

    Now it is four years later and despite lots of physio, hydrotherapy etc., my knee is at ROM about 30/60, always painful. Also need TKR on my other knee which was not good to start with but has taken a beating due to the last 4 years.

    I have seen a consultant every year and they only say I need a revision but it is not guaranteed to have a better result. However, in the last few months I have had really severe sharp pains, a feeling as if something is ''catching' in the knee and my limited mobility has been reduced even further.

    Went to consultant who specialises in revisions and he says I should have the revision. He said my knee is unstable and xrays showed the patella is not in the right place. He says the outcome should be good.

    I do know that it is a longer and more complex op than the original one and am very anxious. I know I have no choice as there is nothing else I can do but feel very negative about it. It would be at the same hospital, different surgeon.

    Anyone had similar fears and how did it work out for you?
     
  2. Pumpkln

    Pumpkln FORUM ADVISOR Forum Advisor

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    @tabbykit ,
    Welcome to BoneSmart, glad you joined us!

    I had the same feelings before my revision as do most of us. Surgery time is a little longer and complex, for an experienced surgeon who specializes in revisions, it is a routine procedure. My knee was unstable and painful, the revision made a big difference.
    @maryo52 waited a number of years for her revision and has done very well.

    Here is a link to a list of members who have had revisions.
    https://bonesmart.org/forum/view/knee-replacement-recovery-area.9/?prefix_id=13

    @Josephine our forum nurse and director is in the UK and can advise you about hospitals and surgeons in the UK.

    Please post your TKR surgery date, a moderator will add it to your signature for you. Having the exact date will help us properly advise you. Thanks!

    New BoneSmart members like you are in various stages of their journey to joint replacement. Making the decision whether or not to have surgery and preparing for surgery can be easier once you have done your research and know what lies ahead. Here are some tools that can help you decide what is best for you.

    If you are at the stage where you have joint pain but don't know for sure if you are ready to have surgery, these links may help:

    Score Chart: How bad is my arthritic knee?
    Choosing a surgeon and a prosthesis
    BMI Calculator - What to do if your surgeon says you're too heavy for joint replacement surgery
    Longevity of implants and revisions: How long will my new joint last?


    If you are at the stage where you are planning to have surgery but are looking for information so you can be better prepared for what is to come, take a look at these links:

    Recovery Aids: A comprehensive list for hospital and home
    Recliner Chairs: Things you need to know if buying one for your recovery
    Pre-Op Interviews: What's involved?


    Regardless of where you are in the process, the website and app My Knee Guide can help you stay organized and informed. The free service keeps all the information pertaining to your surgery and recovery in one place on your smartphone. It is intended to be a personal support tool for the entire process.

    And if you want to picture what your life might be like with a replaced knee, take a look at the posts and threads from other BoneSmarties provided in this link:

    Stories of amazing knee recoveries
     
  3. Jockette

    Jockette FORUM ADVISOR Forum Advisor

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    I’m sorry you’ve had so much trouble. We have this surgery expecting it to fix our issues, not cause more. When a revision is necessary I think there is always a fear that it also won’t work.

    I have a partial that has never felt right and I have the same fear that a revision won’t be any better. Thus far I have not been offered a revision as my X-ray looks fine and 3 surgeon’s don’t see a reason to look further for my discomfort.

    Best wishes to you for a successful revision. Hang out here with us, we’ll be with you every step of the way.
     
  4. Momma-me

    Momma-me member

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    Hi there,
    I am sorry that you have been through so much difficulty. There are many of us here that can relate, unfortunately.
    I wish you all the best on your revision, and hopefully, it will be exactly what you needed!!
     
  5. tabbykit

    tabbykit member
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    Thank you for your replies! Good to know that there is support to be found! Yes I am fearful of going through a revision and all it entails and ending up the same or worse.

    I am also anxious about pain meds. Prior to the TKR I told them I was allergic to codeine. I was given Tramadol, other painkillers, aspirin etc. Home from surgery my GP visited to ask how I was. I said I was in a lot of pain and could not sleep. He advised me to double the dose of Tramadol. I did so that night and was rushed to A&E with anaphylactic shock.

    They let me out 24 hours later and it happened again, and again, then I was in for some days. They said it was possibly the Tramadol which caused it as it is in the same family as codeine. I was told to stop all meds as anything could now cause a reaction and have not touched so much as an aspirin since then (about a week post-op).

    So I am worried about how they will give pain medication. Anyone had similar?
     
  6. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    How much Tramadol were you taking at that time?
    Aspirin is one of the NSAID group and not a pain killer. Mostly it's prescribed as an anti-coagulant.
     
  7. Celle

    Celle FORUM ADVISOR Forum Advisor

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    Have you taken Panadol/Paracetamol in the past? (Called Tylenol in the US.) It's not an opiate (narcotic) like Tramadol and Codeine, so not in the same family.
    If you've had no problem with it, you can get moderate pain relief by taking it on a regular basis - 1,000 mg (2 x 500 mg tablets) six-hourly, to a safe daily total of 4,000 mg.

    You need to check any other medications you're taking, such as cold cures, to make sure there's no Panadol (also called Acetaminophen) in them. If there is, reduce one or two of your regular doses, so you stay within that safe 24 hour limit of 4,000 mg.
     
  8. Pumpkln

    Pumpkln FORUM ADVISOR Forum Advisor

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    tabbykit,
    Click on the Pain Management button in the banner at the top of the web page for more information. There are alternatives they can use for pain, ask your Doctor and Surgeon.
     
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  9. Jockette

    Jockette FORUM ADVISOR Forum Advisor

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    @lovetocookandsew will you tell tabbykit about your experience with pain control with your revision? Thanks!
     
  10. lovetocookandsew

    lovetocookandsew FORUM ADVISOR Forum Advisor

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    Last edited by a moderator: Apr 19, 2019
  11. rosieNZ

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    Hi Tabbykit.
    What great advice you have bern given.
    Knowledge is power after all. Its natural to feel anxiety (I bet most people do). No one has a TKR without hoping and expecting a good outcome. Your past experience will help you request information, conformation of how your treatment will be managed and support from your surgeon to gain a positive outcome.
    The great advice on pain management and surgical options here will also help you.
    Having an end to your pain, discomfort and disability is within reach for you. Lets hope the surgery is done without delay so you can move forward again xxx
     
  12. Jockette

    Jockette FORUM ADVISOR Forum Advisor

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  13. tabbykit

    tabbykit member
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    Thanks again, all of you, just about to read the thread from @lovetocookandsew . Re Tramadol I cannot remember the exact dose, not the other meds - I did not keep a note of it. It was Tramadol, another pain med (Naproxen?), aspirin as bloodthinner, plus Paracetamol and Ibuprofen I think. Doctors at A&E said it was most likely the doubling of Tramadol which 'tipped the balance' and caused anaphylactic shock. After my second admission to A&E with this they told me to stop taking EVERYTHING, and I have been told several times since then that any meds could trigger an allergic response. I was not previously allergic except to COdeine and Penicillin (both a long time ago). I now have Epipens but have had no other allergic responses. Just anxious about what they can give me for pain relief next time!
     
  14. Celle

    Celle FORUM ADVISOR Forum Advisor

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    I don't think that can be correct, because there are so many different combinations of ingredients in medications. As an example, someone who is allergic to penicillin may still be able to take other antibiotics, as long as they aren't penicillin-based.

    Certainly, you should avoid all opiates/narcotics, but medicines that don't contain narcotics may be safe for you. This is something that you should investigate later, when you've recovered from your knee replacement.
    I wonder if a pain clinic would be helpful for you?
     
  15. tabbykit

    tabbykit member
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    @Celle - various doctors have repeated this since the anaphylactic episodes. I even had to stop the blood pressure meds I had been on for some years. They said I could try Paracetamol for the pain, which I tried, but it didn't help. I have never taken anything else since then.
    I have read the thread by @lovetocookand sew, from the part before revision surgery, and found it very helpful. The pain management (without Tramadol) stuff was a bit scary, but it's encouraging to read that by week 3/4 she was making a good recovery. I am very interested in the PT info here on BoneSmart - seems that we should not allow PTs to do anything which forces the knee, in fact no exercise except heel slides and gentle walking around the house. After my TKR (which this revision is to replace), the PTs were quite aggressive, the 'window of opportunity' etc was often quoted. Then I had physio at home, again quite aggressive, with one PT forcing my knee to measure it. But what I don't understand, and if anyone can help with this I would be most grateful ....
    after my TKR 4 years ago and following anaphylactic shock, I was out of it for about 2 weeks and did not do any exercise. Was in hospital hooked up to heart monitor etc and unable to move. So, for those two weeks I did indeed rest and sometimes elevate, although no ice, yet later I was told that my poor recovery and now the need for a revision was due to adhesions caused by not exercising during those early days. Yet on here I am reading that those who did no exercise had good outcomes. Who is right here?
     
  16. Jockette

    Jockette FORUM ADVISOR Forum Advisor

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    I’m going to ask @Josephine to respond to your question here.

    I suspect it was all that aggressive therapy, not the inactivity of the first 2 weeks, that has influenced your current state.

    We trust our medical team to know what’s best for us, so we do what we are told to do. I did the same.

    It wasn’t until I found Bonesmart that I learned there were different opinions about this recovery. I learned that not all surgeons and not all PTs recommend force bending our knee.

    The gentle approach makes so much more sense. It’s a shame the aggressive approach seems to be more common. I will never allow those aggressive techniques again.
     
  17. tabbykit

    tabbykit member
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    Thank you @Jockette, I appreciate your reply, and would appreciate any information from Josephine. I am now curious to know if the adhesions are formed from the aggressive PT, something I had not considered previously.
     
  18. Jockette

    Jockette FORUM ADVISOR Forum Advisor

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    Have you been told you have adhesions?

    Here is an article from the Bonesmart library about them:
    https://bonesmart.org/forum/threads/mua-manipulation-under-anaesthetic-and-adhesions.3656/

    These are our recovery guidelines that we recommend to help prevent actual adhesions.

    Each article is short but very informative. Following these guidelines will help you have a less painful recovery.

    Knee Recovery: The Guidelines
    1. Don’t worry: Your body will heal all by itself. Relax, let it, don't try and hurry it, don’t worry about any symptoms now, they are almost certainly temporary
    2. Control discomfort:
    rest
    elevate
    ice
    take your pain meds by prescription schedule (not when pain starts!)
    don't overwork.
    3. Do what you want to do BUT
    a. If it hurts, don't do it and don't allow anyone - especially a physical therapist - to do it to you
    b. If your leg swells more or gets stiffer in the 24 hours after doing it, don't do it again.​
    4. PT or exercise can be useful BUT take note of these
    5. At week 4 and after you should follow this
    6. Access to these pages on the website

    The Recovery articles:
    The importance of managing pain after a TKR and the pain chart
    Swollen and stiff knee: what causes it?

    Energy drain for TKRs

    Elevation is the key

    Ice to control pain and swelling

    Heel slides and how to do them properly

    Chart representation of TKR recovery

    Healing: how long does it take?

    Post op blues is a reality - be prepared for it
    Sleep deprivation is pretty much inevitable - but what causes it?

    There are also some cautionary articles here
    Myth busting: no pain, no gain
    Myth busting: the "window of opportunity" in TKR
    Myth busting: on getting addicted to pain meds

    We try to keep the forum a positive and safe place for our members to talk about their questions or concerns and to report successes with their joint replacement surgery.

    While members may create as many threads as they like in the majority of BoneSmart’s forums, we ask that each member have only One Recovery Thread. This policy makes it easier to go back and review the member’s history before providing advice, so please post any updates or questions you have right here in this thread.
     
  19. Celle

    Celle FORUM ADVISOR Forum Advisor

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    Paracetamol does work pretty well, as long as you keep taking it on a regular schedule. You have to keep up the levels in your bloodstream. A suitable regime is 1,000 mg (2 x 500 mg tablets) six-hourly, to a safe total of 4,000 mg each 24 hours. You need to check there's no Paracetamol in any other medications you're taking, such as cold cures , and if there is decrease one or two of the regular dosses,so you stay within that safe 4,000 mg daily limit.
    That "window of opportunity" is a long-held myth. I don't know where it originated and I wish it would go away, because it causes many people a lot of stress and worry, and it can be the cause of adhesions.
    There's no need to rush to get ROM (Range of Motion) because it can continue to improve for a year, or even much longer, after a knee replacement. There isn't any deadline you have to meet:
    Myth busting: the "window of opportunity" in TKR
    I'm sorry, but you were told a lot of rubbish. @KarriB had her leg in a splint for several weeks and she was not allowed to bend it at all, but she gained excellent ROM and a knee replacement that works very well.

    Aggressive PT (physiotherapy) is far more likely to be the cause of adhesions.
    Why? Because exercising too hard causes your wounded knee tissues to get angry and inflamed. Inflamed tissues are drier than normal tissues, so they stick together more easily, and form adhesions.

    Adhesions, in spite of what you've been told, are actually quite rare. They aren't just sitting there, waiting to pounce if you don't exercise enough. They're quite different from normal scar tissue, which is necessary to heal your wound.

    We've had many people here on BoneSmart who developed adhesions through aggressive PT and yet whose revisions worked out well, because they adopted a more gentle approach to recovery.

    For what it's worth, not all surgeons and PTs believe what you were told.
    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. That gentle walking is all the exercise our new knees need initially.
    After a 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. I think that speaks for itself.

    He's the surgeon in town that other surgeons refer their problem knee replacements to.
    He does revisions on people whose surgeons recommended aggressive PT and, with his approach, they do well, too.
     
  20. KarriB

    KarriB FORUM ADVISOR Forum Advisor

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    Celle is absolutely correct. I was in an immobilizer for 4-6 weeks. Four weeks with no bending at all and the last 2 weeks I was allowed to lay, sit or walk around the house without the immobilizer. I asked my dr whom I saw 2x a week if my knee would ever bend again and he always replied, “the knee will bend when we tell it to bend”. He was right! My OS did prescribe non-aggressive PT. When I asked what that meant he demonstrated by moving my foot about 2 inches with his foot. So that was all I did for a few weeks, but eventually (a few weeks later) I had a full rotation on the exercise bike. My TKR allows me to do almost anything I want with the exception of kneeling or sitting with my leg bent underneath me. I travel, walk a few miles every day, shop without pain. My Os originally said he’d be happy with 90% ROM, but I’m well past that.

    It’s quite possible the adhesions were due to the aggressive therapy and not the passive state of your knee.
     

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