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[THR] Need advice and/or opinions<

Discussion in 'Hip Replacement Recovery Area' started by scstampin, Jan 11, 2017.

  1. scstampin

    scstampin Junior Member
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    Hi All!

    I desperately need some advice/opinions.

    I am 2½ years out from my RTHR, and having episodes of severe, excruciating pain that started around Christmas. I have had ongoing chronic pain issues since my replacement, but this severe pain is new.

    I apologize if this gets a little long, but I thought I should explain what's happened up to this point.

    I had my RTHR in July of 2014 due to AVN.

    At my 3 month check-up, everything was going pretty good other than some persisting mid thigh pain. At that point I wasn't too worried because I wasn't that far out from the surgery and assumed it would go away over time.

    Before my replacement my left leg was already 16mm shorter than my right from a car accident years ago, but after surgery it felt closer to about 1 1/2 inches. Long story short, after talking to a different surgeon that did a scanogram, my actual LLD after surgery was 28 mm (The rest evened itself out). Since surgery I have had to had a lift of just over 1" added to all of my shoes. My surgeon and the surgeon I saw for a second opinion both recommended I have surgery on my left leg to lengthen it 1" using an internal rod and magnet device called Precice, after i was all healed from the hip replacement.

    At 7 months, I went back to see my surgeon because I was having worsening groin pain that went all the way down to the middle of my thigh on the front. Everything looked fine on the xray, and blood work did not show signs of infection.

    Over the next 1½ years I went back to see my surgeon several more times. X-rays of my lumbar spine were normal and he didn't think the pain was coming from my back. They did an ultrasound-guided trochanteric bursa injection, as well as prescribing Voltaren Gel to apply 4x/day, neither of which helped.

    My records from the last appointment I had with my surgeon in June of 2016 says "As of right now, the aetiology of her pain remains unclear" and at that point my surgeon referred me to one of his colleagues.

    I saw his colleague in July of 2016, and he basically said he agreed with all of my original surgeon's findings, and that I may just have to deal with chronic pain.

    At this point, my thigh pain was pretty constant, and the groin pain was worsening and sometimes I would have shooting pain in my groin, as well as down my thigh. I would also have pain in the groin and through to my buttocks any time I was sitting for very long, and driving more than a half hour was really painful and I would bring ice packs anytime I was driving. Weight-bearing did not cause pain. It actually seemed to be worse at rest.

    Sometimes it would feel as thought it was going to give out the first couple of steps when I got up or was going up stairs, but it wasn't really painful. Just felt a little unstable.

    Over the course of the 2 years that I continually went back to my surgeon for answers, I had tried a number of things to alleviate the pain; Tylenol, ice, dry needling, acupuncture, Graston therapy, chiropractic care, physical therapy as well as periods of NOT doing any PT and staying off my leg for several weeks at a time in case it was a muscle injury that needed to heal.

    After seeing my surgeons colleague, I decided to make an appointment with a revision specialist at a different facility, but they were booked out to February 2017. I am 34 years old and have 4 kids at home, and just don't feel satisfied with the answer being it's chronic pain that you'll just have to try to manage.

    October 20, 2016 I had the surgery on my left leg to lengthen the femur 1 inch. They surgically broke (cut) my femur and put a telescoping rod in it. And then I had this device that I would put on my leg, over the magnet part on the rod, several times a day and it would lengthen a little bit each time, doing about 1 mm/day.

    The lengthening process took until December 5th, and since then the bone is just filling in and healing, which could take another couple of months.

    Since the surgery in October I have been on crutches and can only put 30lbs of weight on my left leg.

    During all of that I was still having the same pain in my right hip and thigh.

    Then on Christmas day, I was using the bathroom, standing in front of the toilet with most of my weight on my right leg and when I bent at the hips to sit down, I got a sudden excruciating pain and couldn't put any weight on my right leg all of the sudden, so I kind of slammed down onto the toilet. My daughter heard me cry out in pain, and got my husband. He had to carry me from the toilet to our bed and I was in excruciating pain. After he got me into bed the pain lasted for probably 10 minutes and then finally started to ease up.

    The rest of that day and all of the next day I stayed in my bed trying to move as little as possible because any time I did, it would trigger the sudden severe pain.

    By the 3rd day it was feeling better other than the pain I had before this happened, and the episodes of severe pain were happening less often, so I got up and was walking around a little bit on my crutches that day and the next day. I would have sudden twinges of pain in my groin every so often when I would put weight on my leg, but it was tolerable.

    That evening, in the middle of the night, I turned over in bed and got the sudden excruciating pain again. I thought for sure it must be dislocated, I was in so much pain. My mom came over to be with our kids, and my husband took me to the ER. They got me on IV pain meds right away and then did blood work and an xray. The xray did not show dislocation, and the blood work did not show signs of infection. With the magnetic rod in my left leg, I can't have an MRI.

    They did not find what was causing my pain in the ER, but they ended up admitting me to the hospital for pain control because it was so bad.

    My husband was able to get in contact with the revision specialist and got my appointment moved up to January 3rd, the following Tuesday. After a day and half in the hospital they sent me home with pain meds.

    The episodes of sudden severe pain continued, sometimes even while just laying in bed not moving. And I can't put any weight on my leg without excruciating pain.

    I saw the revision specialist last Tuesday. I was in a lot of pain while I was there which made it hard for him to examine me because any way he moved my leg I was crying out in pain. He looked at the blood work and the xray from the ER. He said the xrays looked fine, and that since the blood work was normal it was only like a 2% chance that it could be infection. Basically he said hopefully it is something going on with the muscle that will heal on its own.

    The pain has not gotten any better, and I don't understand why the severe pain comes on so suddenly. I have had a few episodes where it has lasted close to a half an hour. When we saw the revision specialist, my husband was describing the episodes, and said I look/sound like I am in labor when it happens. I thought for sure it was dislocated when we went to the ER, that's how excruciating the pain was.

    So, I have been unable to walk at all for the last 2 weeks, since I can't really put weight on my left leg either. I have been using a wheelchair any time I do get out of bed, but my husband has to lift me in and out of it, he has to help me get onto the toilet to go to the bathroom, to shower, pretty much to do anything right now. Luckily my husband works from home so he is here to help me, but we also have 4 kids, so he is trying to take care of me, the kids, all of the housework, as well as his job and it has been so hard.

    We are at such a loss on what to do and who we can see to get some definitive answers.

    If it is a muscle injury, is there anything I can I be doing to help it heal? How do we even find out for sure if it is a muscle injury? That's just a guess at this point.


    Here is the chart @Josephine uses so I can show you where the pain is. The groin is where the severe pain is and then it radiates down my thigh.

    back.jpg


    And just in case anyone wants to see them, here are the xrays they took in the ER:

    scst 1a .JPG

    scst 2 a.JPG

    Any advice, opinions, suggestions would be so greatly appreciated!
     
    Last edited: Jan 12, 2017
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  2. Youch!

    Youch! Junior Member

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    Scstampin,
    I'm so sorry to hear about the difficulty and pain you've endured. I'm not a medical professional, so I can help you in that realm, but you asked for suggestions. You don't say where you are getting your care, but something sounds dead wrong about the quality of care you are receiving. I'm wondering if you need to get yourself to a champion orthopedist. I see you are in MN. Any way you could be seen at Mayo? Have you thought about talking to a medical social worker? They often know very useful information that could guide you to hopefully a better provider. It seems like yours has made at least two pretty big mistakes now, and you are the one stuck holding the bag.
    I hope my words are of some use and that things get better for you soon. Do keep us posted.
    Youch!
     
    Last edited: Jan 11, 2017
  3. scstampin

    scstampin Junior Member
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    Thanks for your reply! I actually had my surgery done at Mayo in Rochester!!! We got 2 opinions, one at Mayo and one at Twin Cities Orthopedics but ultimately decided to go with Mayo because, well....it's Mayo and supposed to be amazing! I've had other surgeries done there and all of those went well so I'm not saying Mayo isn't great. But in this situation I often wonder if I would be where I'm at now if I had gone with the other surgeon!?

    How would I get in contact with a medical social worker? That might be a good option for us to try next.
     
  4. Youch!

    Youch! Junior Member

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    That's disappointing, but you are the second person this month who has told me about poor results there (the other was a friend who had eye surgery there).

    Hospitals have medical social workers on staff, so you could ask to talk to one there. In addition, check the Twin Cities (because there are more services there, being a metropolitan area) for what are called "patient advocates" who are either in private practice or affiliated with non-profits. If you or your hubby have an Employee Assistance Program at work, you can ask them if they can help you find someone. Your insurance company's nurse hotline may also be able to help you with this.

    Finally, what if you went for a consult with the other surgeon now?

    Take good care, and I hope your pain ceases SOON!
    Youch!
     
  5. Clipper

    Clipper Member

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    scstampin, I'm so sorry you are having such difficulty. My LLD post both hip replacements was 20 mm. I had my shoes lifted (20 mm for the right shoes about 5 weeks ago) and that seems to have solved my up-down / up-down gait. I think you could have survived with a 25 mm lift and avoided the femur lengthening surgery. That's just my opinion. I took my shoes to a shoe repair guy and he sliced the soles and added 20mm spacers the whole length of the shoes. They work great.

    Something does not sound right when your Dr. advises that you may just have to live with the pain. Don't settle for that BS. Go find another OS. I recommend sending your x-rays to Dr. Brian J. Ladner at North Oaks Health System in Hammond La and get his advice. This man is truly a genius with hip joints.
     
  6. Cas

    Cas Senior

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    @scstampin tam hi there so so rry you have had such a rough ride so far. I am no medic so cant be of much help but Josephine on here has medical experience. I would tag her and ask for advice. I do hope you get some answers soon. Do let us know how you get on. It does seem that something has gone wrong somewhere. Take care.
     
  7. KarriB

    KarriB Forum Advisor

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    I'm so sorry you're experiencing this pain after THR. I'm not a hippie, but I'm tagging @Josephine so she can take a look at your x-rays and read your post.
     
  8. Josephine

    Josephine NURSE DIRECTOR, BONESMART Administrator

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    @scstampin, (I've edited your xray to hide your embarrassment!)

    Your story has certainly given me a lot of food for thought but your xrays are very revealing. However, before I say what I think - do you have an older xray, say a year or two ago that I can compare with these ones?

    Because I am rather perturbed by this malformation on the shaft (in the red square). It looks to me like the bone is fractured and/or compressed and that this may have happened because the implant is loose! (where the red arrows are pointing to a dark shadow alongside the stem)

    However, if there is evidence of this bulge on earlier xrays then I might not be right.

    scst 2 a.JPG scst 3.JPG
     
  9. scstampin

    scstampin Junior Member
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    @Josephine I do have an old fracture site from 1999 when I was in a car accident and broke both of my femurs, and I think it was where the bulge is, but I do feel like there is much more of a dark shadow along the stem in the lower half on the recent x-ray compared to these 2 older ones.


    This one is from July 25, 2014, after the implant was put in on the day of surgery.

    July 25, 2014 (1).jpg

    And this one is from 7 months post op- January 25, 2015


    February 25, 2015 (3).jpg
     
  10. Josephine

    Josephine NURSE DIRECTOR, BONESMART Administrator

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    Oh phew!! I'll tell you, I went cold all over when I saw that!

    But I do agree the shadow appears to have increased. It would certainly match with your symptoms.
    I also suggest you get second opinion.
     
  11. scstampin

    scstampin Junior Member
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    Thanks @Josephine! So the increased shadowing that appears on the most recent Xray could be a sign of loosening?

    I don't know if the revision specialist I just saw last week had the older xrays I just showed you, so I may start there and ask him to take a look at the old xray and compare them to the most recent one.

    And if that goes nowhere, I will definitely be making an appointment for another opinion, yet again! :(

    Also, when I was looking for older x-rays to post for you, I came across this image from my records.

    March 30, 2015 (2).png

    It is from March of last year when I had the fluoroscopy guided injection. Maybe it's just because of the type of imaging, but it looks like the ball is just floating there not really even in the cup!??
     
  12. Josephine

    Josephine NURSE DIRECTOR, BONESMART Administrator

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    I would say it's more than 'could', I'm afraid.
    Oh you made me chuckle there! That's because there is a plastic liner in the cup which doesn't show on the xray!

    exeter cup.JPG
     
  13. scstampin

    scstampin Junior Member
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    @Clipper, There were a couple of reasons both surgeons wanted me to do the lengthening, rather than wear a lift permanently. The main one being that my left hip/leg was over rotated after a car accident in 1999 that I broke both femurs. My hip was over rotated from the surgery so my femoral head wasn't fitting quite the way it was supposed to which led to a laberal tear which I had fixed last year. They said if I didn't correct the over rotation it would probably tear again. To correct the over rotation they would have to break my femur, and since I was needing to have that done, they said it would be worth doing the lengthening since I would already have to go through the osteotomy. They did also say that it puts me at higher risk of dislocating my right hip with such a significant difference.

    Glad the lift is working out great for you though!
     
  14. Josephine

    Josephine NURSE DIRECTOR, BONESMART Administrator

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    Sorry to be picky, @scstampin, but that word makes it sound like they randomly attacked it or walloped with a hammer!
    The proper term is cut or osteotomise.
     
  15. scstampin

    scstampin Junior Member
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    As disheartening as that is, I am also at the point that just having an answer is a huge relief.
    So my next question, which I think I know the answer to, but does a loose stem always need a revision, or at least a new stem put in? :sad:

    Ohhhhhhhh! That makes sense! It looked so weird and I was really confused! LOL!
     
  16. Josephine

    Josephine NURSE DIRECTOR, BONESMART Administrator

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    Putting a new stem in is a revision! But that's very often all that is needed. And it would most likely be a cemented one.
     
  17. scstampin

    scstampin Junior Member
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    Yes, @Josephine...sorry! That does sound a little harsh!!
     
  18. Cas

    Cas Senior

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    @scstampin hi how are you getting on? have you arramged to see another surgeon? hope your pain is a bit better now. keep us posted. we are all here for you.
     
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  19. scstampin

    scstampin Junior Member
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    @Cas Thanks for checking in on me!

    I am still having pain in both the groin and down the front of my thigh, but thankfully I haven't had an episode of severe pain in several days now. I am still unable to put weight on it though.

    I contacted the revision surgeon again and specifically asked him to look at the 2 xrays I posted here (one is from immediatly after surgery and the other is from the ER visit in December). I specifically asked him about stem loosening and he said he didn't see any evidence of that. He basically said he is sorry but can't find anything to lead him in an direction on what might be causing the pain and to go back to my original surgeon or my primary doctor for pain meds if I need them. I got off the phone and kinda lost it bawling and just feeling so frustrated.

    So I called my original surgeon last Tuesday and explained everything that has been going on to his PA, and he called me back saying my surgeon wanted to see me, and they got me in 2 days later. So last thursday I went and saw him (1/19/17) .

    As frustrated as I was last summer with my surgeon after getting no answers, this time he seemed to take the pain more seriously. Maybe me telling him I was looking for answers elsewhere made him realize I am in more pain than what is just "manageable chronic pain"? He had the X-rays from the ER visit, but he said he wanted to have his own X-rays done there so he could compare them having used the same technique used for both xrays.

    He also said there is no evidence of loosening. (I am waiting for my copy of the xrays so I can post them here, hoping Josephine will take a look at them). Looking at them when I was there, I couldn't see the shadowing that I can see on the X-ray I posted from the ER, which I am confused about... but I want to get a closer look once I get my copy.

    Even though my blood work has come back good and not showing evidence of infection, he wanted to aspirate my hip to be sure. He also did blood work to look for metallosis, but he didn't seem to think it was very likely. He said he was hoping to rule that out. I don't know a lot about that other than what I have heard about the metal-on-metal hips causing it, and the recalls on those. I do remember reading somewhere on here Josephine telling another member about complications that can happen if a sleeve was used?

    @Josephine am I remembering that correctly? Can you tell me more about that? I am wondering about it because looking at my records and the implant information it looks like a sleeve was used for mine. Here is what my operative report says:

    Implant Name: pinnacle shell, multi 2 46mm
    Implant Name: hip s-rom prox sleeve ztt 16b sm
    Implant Name: hip j&j srom stem 16x11x150+4L
    Implant Name: pinnacle, liner altrx neut 28x46
    Implant Name: delta-head, ceramic 28mm +3

    When they did the hip aspiration the fluid they drew was pink/reddish, and looking at my online charts, it is noted that the fluid was "slightly bloody", but I don't have any results back yet. Is that what it should look like?

    I go back in 2 weeks to find out the results of everything.
     
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  20. Josephine

    Josephine NURSE DIRECTOR, BONESMART Administrator

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    The sleeve on this device is part of the main stem and is not included in the metal-on-metal issues.
    Is that what you were thinking?

    s-rom sleeve.JPG s-rom stem.jpg
     

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