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Hypermobility that doctor does not suggest protocol for

Discussion in 'Knee Replacement Pre-Op Area' started by buddydog, Mar 14, 2018.

  1. buddydog

    buddydog junior member
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    Well, I am back again... it's been a long long haul. Some time ago I wrote and asked for preparation suggestions for a TKR at the Cleveland clinic. Well, that surgery was cancelled because the doctor said that if a lidocaine injection did not take the knee pain away he would not proceed with surgery.

    The lidocaine did not remove the pain and surgery was cancelled. Months later, now having hip and back severe pain, another Cleveland clinic doc said he also would not have it done because it would raise my rate of mortality, infection was possibility that would cause huge repercussions, and said he would not go through with it himself.

    That leaves me a lot of frustration and depression because the pain is worse everywhere now and I think that is what he docs are afraid of that the knees are not the source of the pain. However, they are both bone on bone. I can't help the fact that I am in so much pain but it is what it is - I don't want to underestimate it before surgery so the docs know the full picture.

    My latest thought is that I may have a spectrum of eds or hypermobility because my joints move too well. I have read that these type of patients don't do well with TKR because their laxity remains in their ligaments and it takes a long time to heal.

    That is what has me stuck - I had a mere meniscal repair years ago and since then, I developed terrible pain, knots, limping, and on and on. I have found a surgeon now in Pittsburgh that is willing to do surgery but does not want to hear about much more than specifically the knee joint. Unfortunately my pain is also in the quad, and swelling and pain below the knee joint is severe.

    Can anyone help or enlighten me? It is terrifying that I may become disabled with surgery or the thoughts that I have to deal with the way things are now..
     
  2. Celle

    Celle FORUM ADVISOR Forum Advisor

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    Hello again @buddydog .
    I'm sorry you're still having problems.

    I don't understand why the Cleveland surgeons are refusing to operate on you.
    TH potential problems mentioned could happen to anyone, but they are all very rare. A surgeon does have to warn about all possible consequences, no matter how unlikely they are.

    I'm going to ask @Josephine to advise you, but she will be off sick for a few days.
     
  3. SusieShoes

    SusieShoes FORUM ADVISOR Forum Advisor

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    I'm not sure why hypermobility is a problem. I know surgeons will operate on people who have that because, well, I have it. It's familial in our case. My mother and sister also have hypermobile joints and both of them have had both knees replaced. We can still do nifty tricks like bending our thumbs back and stuff, but our new knees (five surgeries between us) are all doing great. :)
     
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    Last edited: Apr 3, 2018
  4. Jamie

    Jamie ADMINISTRATOR Administrator

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    Do you possibly have current xrays that you can post here? Since you mentioned that your knee is bone on bone, it should be plenty obvious to any surgeon that only a knee replacement will help with that pain and mobility.

    Why did the surgeons feel you had an increased chance for infection? Do you have diabetes or a high BMI? That response seems a bit puzzling to me.

    How about letting me know what surgeons you saw at Cleveland Clinic and the name of the person you're seeing in Pittsburgh. I can take a look at them for you. I do have surgeons at both locations that we recommend and I'd be curious to see if any of the folks you saw are on our list.

    Please tag me when you respond so that I see your post quickly. You do that by typing the "at" sign before my username with no space.... like this ... @Jamie. You'll know you did it correctly if the tag turns blue once you post your reply.
     
  5. buddydog

    buddydog junior member
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    @Jamie
    I'm sorry but I don't know how to respond with tag. Hmm you mean in this reply space?

    Perhaps that was right. I saw a doctor Bloomfield and Murray at Cleveland clinic; in Pittsburgh, Dr Sauber who is scheduled to do my surgery in June. No diabetes, BMI is probably on border (they never mentioned it but I know I am heavey) and I don't know how to get you those xrays
     
  6. Celle

    Celle FORUM ADVISOR Forum Advisor

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  7. Jamie

    Jamie ADMINISTRATOR Administrator

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    So why were you told you had an increased risk for infection. That comment is very puzzling to me.

    You did do the tag correctly. That's how you let me know you've responded and I should come to your thread to read it.
     
  8. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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  9. buddydog

    buddydog junior member
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    Thank you.. I actually have a print out of protocol if there is a suspicion you have hypermobility from a Dr Spanos... very interesting but one surgeon dismissed it. Haven't had quite the courage to show this current one.

    I am re reading your posts and in the meantime, I do have CDS of my knees but don't know how to look to post the scan. Also, can you advise where else to look on the forum to prepare? Needless to say I am a bit terrified. Yes, have signed up for Joint Replacement Awareness Day. Thank you!

    Also your recovery blew my mind! absolutely!
     
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  10. Celle

    Celle FORUM ADVISOR Forum Advisor

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    @buddydog

    Here are some articles that will help you to prepare for surgery:
    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
     
  11. buddydog

    buddydog junior member
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    thank you i will read this. so afraid that i will be in worse shape. if there are other forums you think i would benefit from, let me know! thank you
     
  12. Celle

    Celle FORUM ADVISOR Forum Advisor

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    BoneSmart is the best forum. We have surgeons who advise us, Josephine is a nurse with over 40 years of practice in orthopaedics, and we have all been through joint replacements ourselves. We know what it is like!

    Here is the reading we give to people after surgery. You might benefit by reading the articles beforehand:
    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. Here is a week-by-week guide for Activity progression for TKRs


    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

    Please don't be overwhelmed by the list. The articles are not long and they and contain information that will answer many questions and help you make your recovery much easier on your knee and on you.

    We are here to help in any way we can: answering questions and concerns; supporting and encouraging you from start to finish.

    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 a 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 history before providing advice.
     
  13. buddydog

    buddydog junior member
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    anyone know how to post a question during the program airing now? thanks
     
  14. SusieShoes

    SusieShoes FORUM ADVISOR Forum Advisor

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    If you are in the livestream, and not using full screen, you will see a big box on the lower left where people are coming, going, and asking questions. At the bottom of this box is a place for you to type your question and send it.
     
  15. buddydog

    buddydog junior member
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    the program was great! i have yet to hear the ending (will go back and listen) but i am scheduled in june for tkr as said, and still just having so much anxiety over it. having my hip injected tomw because there is much pain in hip and back area that no one is figuring out. probably why i am so hesitant to have the surgery. anyway, i emailed the staff for my surgery because i have heard very little from them. i emailed many questions i learned from the joint program - i don't think the docs staff will be too happy. do you know if the docs from the program itself ever take questions? also, do you recommend i go to the forum that asks if surgery in may is coming up? sorry with so many questions but was hoping to get a bit more guidance from the staff. i am a wreck.
     
  16. Celle

    Celle FORUM ADVISOR Forum Advisor

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    It is part of your surgeon's job to advise you fully about the surgery, so that you can give "full and informed consent" to it. That includes answering your questions, which you have every right to ask.

    If you don't hear from your surgeon, take a copy of your questions with you to the hospital. Ask (nicely) to have them answered before you sign any consent form.
     
  17. buddydog

    buddydog junior member
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    @Jamie
    I am having a heck of a time... my surgery is june 11 at allegheny general hosp in pittsburgh - a distance from my home. i did take the class and am working very hard at pre hab. still looking over the links you all sent. however, my stress is thru the roof with the lack of communication. there is supposed to be a diamond care team, and i havent heard much from them. and now apparently i have messed things up because i want to see the doc - my other knee than the one originally planned for surgery - is giving out and i dont know if i can support it. i asked if i could make an appt and it upset the nurse because it changes the protocol. theres pre surgical testing, a cat scan, and no one is telling me anything short of a tentative date to see the doc. this diamond care team is not what it says it is and i feel lost. maybe i should just move this date out if they will let me. can you advise?? i am trying not to panic.
     
  18. buddydog

    buddydog junior member
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    @Jamie
    also, is there anyone that would know of a contact at this hospital? should i be posting in the surgery forum for june?
     
  19. SusieShoes

    SusieShoes FORUM ADVISOR Forum Advisor

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    No, @buddydog, you’re posting in the right place! :friends:

    Do you have a number for the Diamond Care Team (it’s a cool name, if only they would live up to it)? They may have given you a number with your first packet of information, or sent it to you from the hospital. If not, you might be able to contact the team using the Patient Information number on the hospital website.

    You could also call your doctor’s office and tell them you need the number for the team because you need to coordinate with them. Maybe the surgeon’s office can help you with that.

    The surgeon’s office is of course concerned if you are talking about changing which knee you do, or want to do both knees now, or in any other way alter their (the surgeon’s) schedule. They’re only fixating on that because it’s their job to keep the surgeon’s schedule going smoothly. :ok: If your surgeon has a surgical coordinator, that would be the person you should talk with.

    Your other knee acting up is something the surgeon should be informed about. Is there a way you can communicate with him by phone or email? You may not need an appointment. Just a thought.

    Deep breaths. This will get sorted out.
     
  20. buddydog

    buddydog junior member
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    also, am i wrong to request allergy testing? they are giving me a difficult time about it... saying that if the surgeon is using ceramic there is no need for testing. i thought the cement and other components were involved. i have allergies to everything!
     

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