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[TKR] Eight Months and Still Looking for Answers

Discussion in 'Knee Replacement Recovery Area' started by Kathy0427, Aug 14, 2018.

  1. Jockette

    Jockette FORUM ADVISOR Forum Advisor

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    Hugs to you as you go through this recovery. We all have different aspects of its difficulty. Knowing we are not alone is very important. We don’t always come face to face with someone who understands, but through this forum, there are many who do understand. :console2:
     
  2. Kathy0427

    Kathy0427 member
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    @Jamie, I plan to provide more of an update later today, but - for now - any suggestions for highly rated revision surgeons in either Cleveland (Cleveland Clinic?) , Pittsburgh or Arlington, VA. areas?
    Thanks for your help.

    Quick update:
    I was told by my hematologist I could discontinue Eliquis and take a baby aspirin for a one month trial, which is over this coming week. I have also added Naproxen once a day ( hematologist said it was okay) . Unfortunately, the pain is still persisting - just a burning, searing pain in the middle of my knee cap stretching down toward the shin area.
    May need a second set of eyes on my right knee if my original OS still does nothing when I see him in a couple of weeks.
    Thanks in advance!
    Kathy
     
  3. Jamie

    Jamie ADMINISTRATOR Administrator

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    Here you go. These surgeons are some options for you to check out:

    Pittsburgh, Pennsylvania

    University of Pittsburgh Medical Center

    Dr. Lawrence S. Crosset
    Knee and hip revisions. Excellent reputation and featured on Wright's live surgery videos.


    Washington DC area

    Dr. Stuart Melvin III
    Washington DC and Chevy Chase
    (hip and knee revisions)


    Cleveland, Ohio

    Dr. Viktor Krebs
    Cleveland Clinic
    Primary and revision hips and knees
    Speaker at 2018 ICJR workshop on problem hips and knees

    Dr. Bernie Stulberg(Cleveland) - works with high BMI patients
    Dr. Ken Greene(Medina) - works with high BMI patients


    Here's another service that might interest you:

    Virtual doctor appointments are available from Cleveland Clinic:
    The Cleveland Clinic ortho site suggests they have a very reasonably priced virtual visit and a remote consultation review.

    Virtual Visits with Orthopaedics
    Select patients now can see our providers online from their home or office by using the Cleveland Clinic Express Care® Online tool. This service allows patients a fast, secure and easy way to receive care from their healthcare team in a live virtual visit using a smartphone (iPhone or Android), tablet or computer. The benefits of choosing a virtual visit include no travel or parking, less waiting, significant time savings, no facility fee and the convenience of seeing your physician from wherever you choose.

    Virtual visits with an orthopedic surgeon.

    New patients with common knee injuries or knee pain.

    Established patients scheduling follow-up care appointments such as:

    Post-Surgical & wound check visits
    Fracture care follow-up
    Injection follow-up
    Musculoskeletal injury follow-up
    Per-operative teaching prior to surgery
    Ask your physician if a virtual visit follow-up appointment is right for your follow-up care.

    What is the cost of an orthopaedic virtual visit?

    New patients: $75
    Follow-up visits: $49
    Post-surgical visits: $0*
    Fracture care visits: $0*
    *Within 90 days of incident.
    If you would like to use Express Care Online for your next visit, please call your provider’s office. If you are eligible, our team will schedule your virtual visit and provide details on the cost of your appointment and setup instructions.

    MyConsult

    The MyConsult online medical second opinion service securely connects you to the specialty physician expertise you need when you are faced with a serious diagnosis. Following a thorough review of your medical records and diagnostic tests, Cleveland Clinic experts render a medical second opinion that includes treatment options or alternatives, as well as recommendations regarding your future therapeutic considerations.
    https://my.clevelandclinic.org/departments/orthopaedics-rheumatology/appointments-locations


    Akron, Ohio

    Dr. Paul Wilke
    Akron General Orthopedics/Cleveland Clinic
    224 W. Exchange Street
    Ste 440
    Akron. Ohio 44302
    330-344-2663

    Knee and hip revisions.
     
  4. Kathy0427

    Kathy0427 member
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    @Jamie, thanks so much for your suggestions.
    Unfortunately, I have a little experience with Dr. Crosset. Maybe ten or so years ago, he was my mother’s doctor. Did a hip replacement for her and continued to see him for her back. My Mom was about ninety at the time and was having some very bad issues with her back and had fallen. When we finally got in to see him -after a very long wait that was VERY uncomfortable for her- he proceeded to make her lay flat on her back (VERY painful for her!) and he invited at least five interns in while he examined her. In her presence he announced she “ had the worst back he had ever seen” and proceeded to point out certain areas that were “useless to address at her age”. He was definitely more interested in training those doctors than actually helping my mom. It was as if she wasn’t even present. I was SO angry I could hardly keep my mouth shut. She didn’t want me “ to make him mad”. So, although he did a good job on her hip, I was very angry with his treatment. He acted as if she was a cadaver! And his poking and prodding - plus insisting on her laying FLAT - exacerbated her issues, without helping her. His answer to her visit was to admit her for “observation” to Presbyterian Hospital and release her two days later after several tests showed “nothing new”, with her pain still great. (BTW, it took a geriatric doctor at a nursing home to prescribe gabapentin, which did end up helping her, two weeks after her visit to the hospital to see Dr. Crosset. You see, we had visited him in the first place because she had fallen down steps a week previous and we thought she had suffered some damage to her back.)
    Anyway, he may be a fine surgeon, but his awareness of his patient’s needs is somewhat lacking. My poor older Mom’s spirit was quite broken after that horrific visit and his insensitivity. So, Dr. Crosset is out. His “thing” might be more teaching at this point in his career, rather than helping individual patients.
    I am thinking about seeing the doctor suggested at Cleveland Clinic . My current doctor is Dr. Brian Hamlin. I like his personality very much and he seems exceedingly kind and not at all egocentric like it seems many orthopedic surgeons are. He is a revisionist surgeon already, which is partly why I chose him - for Dr. DiGoia’s patients. They are in practice together. (Dr. Anthony DiGoia at Magee did my brother’s replacement, but he won’t consider you unless you are not in any obese category. Unfortunately, I still am, not morbidly so- but still in that range in weight.)
    Dr. Klatt is also listed highly at UPMC, but - because I once had a blood clot in my leg - he told me “ no one would touch me!”.
    I received a private message from Sheryl @Me2, so I may pursue seeking a second opinion at someone out of the UPMC network. For those of you who don’t know- we in Pittsburgh have been having a terrible time with two warring health networks - UPMC and Highmark. UPMC demands exclusivity, they will not admit patients with Highmark insurance unless the Highmark patient pays up front. Highmark has bought the Allegheny General Hospitals yo make certain their patients have care in the long run. It’s a terrible situation right now, as you seem to need to choose between them for your care; it’s a UPMC doctor if you have UPMC insurance or an AGH doctor ( and hospital) if you have Highmark. However, that division is being sought and enforced by UPMC, not Highmark. UPMC seems to want to control the patient via funneling you with their insurance policies into their hospitals and have a very aggressive business plan to - especially - get you into their Medicare Advantage plans, so then they control everything . You see their doctors, therapists, and have a prescription plan through them! I still have a Medicare/ Medigap combination, so they still need to see me because my primary insurance is Medicare. But - who knows - if UPMC gets powerful enough, they might want to shut out us folks also. Very scary! And they wonder why the public is looking at single payer or Medicare for All!
    Sorry, all this is off topic now, but I wanted to thank you for your suggestions to me. I do think I will need to pursue this as I am now seven plus months into my recovery and something is definitely wrong with this replacement !
    Kathy
     
  5. Jockette

    Jockette FORUM ADVISOR Forum Advisor

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    I’m sorry that doctor put your mom through that.

    Years ago my mom broke her pelvis. Several days after she was discharged home we had to go to the office for a follow up. It was very hard for her getting in and out of the car, riding in the car, we waited a long time in the waiting room where she sat uncomfortably, they had me fill out pages and pages of forms, then asked all those questions verbally. The doctor spent 5 minutes with us, and we had to repeat the difficult effort to go home. I was so mad.

    I hope you find one you are comfortable with.
     
  6. Kathy0427

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    Hi, @Jockette. So good to hear from you.
    Yes, having my Mom live with me in her nineties showed me that doctors seem, in general, to treat the very elderly as if they were no longer there! My mother was a little hard of hearing but was fairly cognizant of her issues and deserved to have these doctors speak to her directly. Instead, doctors (men as well as women) would always talk to me! It was as if they thought she needed an interpreter.

    A few times I got up the guts to tell them to speak to HER and not me, as she was his/ her patient! But then she would ruin it all by looking at me if she was asked a question. She had lost faith in her own ability to answer these guys on her own! Eventually, since it seemed at the end she must have had ten doctors we were seeing, they began to speak to her. Then, unfortunately, a time came where they DID need to address me all the questions. Sigh!

    As far as myself, I am still up in the air about whether to pursue a second opinion at this point. I am at seven months post TKR and have had no consistent relief yet. Pain varies in nature (mostly burning, but sometimes extreme tightness). I am thinking, again, this may be nerve pain.

    Sometimes, when I go swimming and do some hamstring stretching, I do seem to get some “low pain” periods. Go figure! Today is such a day, while last weekend - when I couldn’t swim - was quite painful. Drives you crazy! I discussed getting an allergy test with my OS’ PA today. Seems I would need to pay $500 out of pocket for this test, plus, from what I read, it’s still not totally indicative of whether you are allergic to it or not. Apparently, some people who appear to be allergic to some metals -per the test- never develop pain nor have to have the implant replaced.

    Now, I am curious about whether you have braved getting another opinion about your ongoing pain? Your visit to the revisionist that “ blew you off” would make me feel just like you. VERY ANGRY!
    But, don’t give up; you give all of us such great feedback and are so very kind. I just know your good time is coming!

    Thank, always, for your kind feedback.
    Kathy
     
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  7. Jockette

    Jockette FORUM ADVISOR Forum Advisor

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    I have wondered about a metal allergy for my situation. Sometimes I have an itchy burning sensation in The Spot that always bothers me. If a doctor agreed to order one for me I would gladly pay for it.

    I’ve heard good things about that blood test from that lab in Chicago.

    I had another second opinion last month and again, my new X-rays taken that day look great. I asked about a bone scan but he didn’t think it would reveal anything. At least this doctor was very nice and actually read and discussed my list of concerns! If it ever appears that I need a revision I think I could work with this surgeon.

    I’m the mean time I just keep on keeping on, in spite of the pity party I had last week on my 2 year knee anniversary.

    I hope as time goes on you will see improvement. It sure does get discouraging at 7 months and beyond to still feel bad.
     
  8. Jamie

    Jamie ADMINISTRATOR Administrator

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    Kathy, I'm so sorry to hear of your poor experience with Dr. Crosset. But, I'm glad you wrote because we do value the feedback from people who have dealings with the surgeons out there. I've had some good feedback on this doctor, so I think you may be right that he wasn't fully engaged with your mother for whatever reason. It's sad when a good doctor does that to a patient.

    Best of luck to you with the doctor(s) you plan to see. Be sure and take written questions and information for them about what's been going on. I would love to hear how each of your visits goes so I can hopefully add more good surgeons in your area to my list.

    As for the healthcare systems you have in Pittsburgh, what a horrible situation! It is certainly leaving the patients out in the cold. I pray that another carrier will see the potential and open up policies for you. There are many good insurance companies out there, but sadly not all of them serve all parts of the country. I've heard of a couple of other states that are having similar problems with one or two of the giant companies that require you to stay "in network" for care. I've got my fingers crossed you can overcome that and find the right doctor to help you.
     
  9. Kathy0427

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    Just an update to my story.
    Now over eight months into my recovery and something is still very wrong with that metal right knee of mine.
    X rays seem to show all is well, but why doesn’t it feel any better (and even worse)?
    Today I had to pull out my cane to walk into my mammogram because the pain to the interior of my knee hurt so badly.
    I was afraid I would lose my balance and fall.
    On Easter, I just sat at my family’s gathering and started to cry because I felt so ashamed of my status.
    Why, oh why, oh why, is this happening to me?
    What did I do wrong?
    Should I have exercised more - or less?
    Should I have pressed my surgeon more for answers? Or should I have just accepted - as he said- I might be one of those people who healed more slowly?
    I am so tired of the pain and not being sure of what to do about it.
    So tired of not feeling normal.
    So afraid of moving forward.
    And mourning that my 25th wedding anniversary will now be spent at my house, instead of visiting beautiful Scotland, where I had spent two years living in my twenties, many years ago.
    I just wouldn’t be able to WALK. Sigh!
    If you can’t tell, I feel somewhat dead inside tonight.
    This knee has sucked the emotional life out of me and all I want to say is: I give up.
    You win!
    I feel somehow that I just want to give in to the depression tonight.
    I know the sun will come up tomorrow and I’ll start fighting, again, to find some answers and get the knee righted.
    I also very much know that having a less than good result to a knee replacement is minor in the big picture of what can go wrong in one’s life.
    But it’s just been a bad year for me.
    Found out my son in law was / is a drug addict. Daughter is now rudderless from the divorce and my darling little grandchildren are hurting badly.
    Prayers are needed for all of them.
    And here I have been on the sideline for months, for the first time unable to really be the emotional anchor for my family.
    Plus my dear husband, I fear, is just getting so tired of this. It’s gets so old... not being up to a long weekend at Niagara Falls or even a romantic getaway to the bedroom.
    I just want my life back. I want to sleep on my operated side without a stack of pillows and in my husband’s arms.
    I wish I never did this.
    My knee was bad, but the pain was never relentless like it seems now.
    Well, have to go on in this fight, and try not to lose hope that someone figures out what is wrong.
    Tomorrow I go to my OS’s office to draw blood for an allergy test. They ordered it for me but I must pay out of pocket for it. Seems unfair.
    One thing I am afraid of is the pain associated with taking this blood.
    Is it drawn directly from the knee area, or is it more like a regular blood test, through the arm?
    When I discussed this test with the doctor at my last visit, he seemed to indicate it was very painful to have this test done. But, it might just be me being hypersensitive to how he answered questions that day.
    Oh well, more pain.
    And I made an appointment with Dr. Viktor Krebs at Cleveland Clinic for s second opinion about what is wrong. It is on August 26, my little granddaughter’s birthday! That is kind of interesting (and maybe it’s a good “omen”) because my knee replacement surgery was done on August 15 of last year, and that date - August 15- was when my mother died.
    Sigh.
    I also made an appointment to start going back to PT with a therapist who (I was told) is the “ very best” with troubled knees, after replacement, as I continue to think some of my current pain is coming from not-yet-recuperated muscles working properly. At a minimum, I am hoping he might be able to better define what he thinks is the issue. He was recommended by the PT who came to the house after my surgery last August. I thought she was very good with me; plus my experience with my “usual” PT was really not good at all. He seemed out of his element as time went on and I was still complaining of pain.
    Do any of you have the name of a surgeon to request an appointment with in Arlington/ Alexandria VA / area as I was thinking that might be another place to try in that I have in laws in Arlington?
    Thanks so much for everyone’s help and just for reading this. Makes me feel heard.
    So many of you have been inspirations to me! Reading all the threads in BoneSmart has made me feel less alone in dealing with this, plus it has enabled me to assert my right to a pain free knee, even if it takes a long time to get there.
    Sorry for being such a downer.
    I’ll dust myself off and be better tomorrow.
    But I figured if anyone knows what I am going through it would be the members of BoneSmart, especially some of you who have had more difficult recoveries. You are my heroes. Every time I read a thread where one of you is comforting someone like me and giving us hope- I am inspired to keep trying to find an answer myself.
    A special thank you to those who are undergoing - or have undergone a revision. You, especially, understand how upsetting it is to keep trying to find answers and your stories give me hope and strength to keep searching.
    God bless you all for your perseverance and love!

    Sincerely,
     
  10. Celle

    Celle FORUM ADVISOR Forum Advisor

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    I'm so sorry you've got a bad case of the blues. I hope that getting it off your chest has made you feel a bit better. :console2:

    We do understand. We've all been there - the depression, the frustration, the wishing for recovery to be quicker.
    Hang in there! We'll help you through this. We're here to listen and give you a virtual hug whenever you need it. :friends:
     
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  11. Pumpkln

    Pumpkln FORUM ADVISOR Forum Advisor

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    Kathy0427,
    Sorry you are having to go through this with your knee.
    I agree a second opinion is a good idea. Someone else needs to take a look at your knee.
    Check out the find a surgeon link at the top of the page to search for a surgeon specializing in revisions or complex joint reconstruction.
    @Jamie may be able to help you locate a surgeon.
     
  12. Kathy0427

    Kathy0427 member
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    @pumpkin and @Celle, thanks for the support. Jamie has already sent me a few names. It’s where I got Dr. Krebs’ name. Just looking now for someone, additionally, in northern VA - even Charlottesville-as my hematologist is down there and I have family in Arlington. There is an insurance war going on in the Pittsburgh area between two battling Health care organizations and we patients/ consumers/ are getting caught in the crossfire. I’m a little hesitant since I used one of them originally, to go to the other for a revision opinion.
    Also, getting a little afraid of the blood draw tomorrow for metal allergy - the LTT test. Anyone know how painful it is? I’m a chicken!
    Kathy
     
  13. Pumpkln

    Pumpkln FORUM ADVISOR Forum Advisor

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    @maryo52 had a metal allergy test, she may be able to advise.
     
  14. lovetocookandsew

    lovetocookandsew FORUM ADVISOR Forum Advisor

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    I had it done and it was just a basic blood draw from your arm-I believe there were several vials, but they only stick you once and it doesn't hurt. Well worth the hassle to find out if metal allergies are causing you any problems.
     
  15. Jockette

    Jockette FORUM ADVISOR Forum Advisor

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    Kathy, I’m so sorry you’re having an especially hard time right now. My pain level is not as bad as yours, but I know a bit how you feel. Like you said, the only place I’m totally understood is here on Bonesmart.

    My first year I felt like most people I came in contact with thought I was a failure and didn’t do enough therapy.

    Now that it’s been 2 years, they are starting to express some sympathy.

    I’ve had 3 surgeons not look past my X-ray to find out what might be wrong.

    I’ve actually had a little bit of improvement recently, so I was encouraged. It was just a minor improvement, but maybe we’re on to something. My ROM did improve in my second year, and my melt downs over my knee have decreased.

    I think I am done with second opinions, unless my knee starts to cause me major pain. I am trying to regroup my thoughts to accept this “new normal.” It’s a little easier to do as we are heading into warmer weather and I can wear shorts again. I’m real tired of the awful way my knee feels when I wear pants.

    I hope your next opinion finds an answer for you. :console2:
     
  16. Kathy0427

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    @Jockette, thank you so much for the kind reply. I didn’t mean to go on for so long, but when I started writing, it felt like the flood gates opened.
    :blackcloud::shrug:
    I was happy to hear you are experiencing some slight relief at long last. I have suspected for awhile that I might have nerve issues, too, as the covers on my bed at night feel like sandpaper sometimes, plus I often can characterize my pain as “burning” .
    I totally get your reluctance to seek other opinions after that horrific second you got! By the way, I ALWAYS take a list of questions to my doctors and very few of them pay them much attention. I just don’t get why that is. Demonstrates a lack of concern that you can’t get past. With something as big an issue as continuing pain into the one year marker, you would think the surgeon would want all the information he could get from you, and I always saw “the list” as being an efficient way to get everything out in the open. When he does this, it Always makes me want to just get up and walk out. Plus, I never go back once a doctor does this to me. It shows zero respect to the patient and I deserve better:yes!:
    I also know how you feel when it comes to just being tired of the whole thing (pain) and not be prepared mentally to do the whole “seeking opinions as to what is going on.” You need a time to just regroup.
    I hope tonight that you are finally getting some real improvement. Of everyone on this blog, no one is more generous with their time and encouragement than you! And I appreciate that so much and hope for even better days ahead for you.
    Kathy
     
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  17. Kathy0427

    Kathy0427 member
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    Can someone change the name of my thread to :
    “Eight months and still looking for answers”
     
  18. Jamie

    Jamie ADMINISTRATOR Administrator

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    Thread title changed for you, Kathy.
     
  19. Kathy0427

    Kathy0427 member
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    Thanks, Jamie. Title seems more fitting for me now, unfortunately.
     
  20. Irish471

    Irish471 senior

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    @Kathy0427 , I just read your thread and I am so sorry for all you’ve gone through! I would be just as depressed:cry: and frustrated! Quick question...was your kneecap resurfaced, too? You mentioned that your pain was always in that area, so I wondered if maybe that hadn’t been done? Just thinking out loud. I am praying you find some answers and definitely would speak to another OS. Big hugs!!!
     

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