I’ve Been Screwed (My Hip That Is)

I finally feel like talking about my most recent hip surgery, which was on the other side of the country.  I now have screws in my right hip, so the title of this post is apt.  I was talking to one of my hip friends last night, and she asked for my blog.  It made me realize I haven’t talked about my hips for a long time.  This is going to get pretty technical, so this is directed towards the hip chicks that read my blog.  Right after my open surgical dislocation surgery I was pretty upset, which I will explain.  But this is why I couldn’t talk about it for weeks post-op.  I didn’t want my emotions to influence my thoughts, and thinking about hips was really depressing post-op.  I think I cried every day for at least a week after surgery.

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A photo of me right before discharge.  You can see how happy I am here XD

This is my third hip preservation surgery in 5 years.  This all started when I was 24, and I tore my right hip labrum doing ballet.  I’ve had a scope on each side, but the right one failed and my labrum retore.  I consulted 10 of the country’s best hip preservation surgeons in 2013 because my right hip is an orthopedic nightmare, so all the experts were disagreeing on what should be done.  I was told various things: nothing was wrong, I was a good scope candidate, I needed my pelvis broken and hip socket derotated (aka PAO), I needed my femur broken and derotated (aka FO), and/or I needed a trochanteric plasty.  The consensus seemed to be I have excessive femoral and acetabular anteversion, but it’s mildly excessive.  And it was the combination of those two causing the anterior instability of my hip.  An excessively anteverted hip socket and femur, or a retroverted socket and femur are worse than an anteversion/retroversion combo of socket and femur.  The measurement of the version of the hip socket and femur is called the McKibbin index.  I have a great paper on it by Tonnis if anyone would like to read.  Dr. S even went to a conference to talk about my case, and they all agreed a derotational femoral osteotomy was the right procedure.

I was scheduled for an open surgical dislocation + femoral osteotomy (aka FO) + trochanteric plasty + labral repair + capsule plication.  At no point prior to surgery did he ever tell me he might not do the FO.  So when he told me after surgery that he didn’t do the FO, I was confused and scared my hip surgery would fail for the second time.  There’s another part to this.  I have Ehlers-Danlos Syndrome, a genetic disorder that causes defective collagen, so my soft tissue heals about 4-5 times slower than a normal person my age.  My recovery from any surgery is much longer and more complicated than someone who doesn’t have EDS.  I had a failed hip scope from March 2010.  And my hip labrum retore so easily, I was terrified it would happen again.  So that’s why I was bawling post-op when he gave me the news.

I’m feeling better about it now, but I’m even less trusting of doctors now.  I will talk about that another time, but I have a very long history of doctors trying to convince me I’m fine, and they have all been wrong.  Doctors have a bias against young, healthy APPEARING adults.  Not all doctors, but I’ve seen a lot, and I can’t tell you how many times they have tried to convince me I’m making up my joint problems.  But I digress. . . If my labrum tears again, Dr. S wouldn’t be my first choice because I have no idea what surgery he’s going to do.  He’s incredibly smart and talented, but I’m scared he wouldn’t do the planned surgery, and I’d wake up again with something else done or not done.  I have seen lots of doctors do something different than the planned surgery, but they almost always tell the patient prior to the surgery that the planned surgery may not go as planned, and then they explain why.

Dr. M said the next step would be a femoral osteotomy (aka FO), and if that failed a periacetabular osteotomy (aka PAO).  What bothered me is that Dr. S would not measure the femoral or acetabular version on my CT.  He told me a radiologist should do it.  Dr. M got a femoral version of +28 on the right and +20 on the left.  The radiologist at Boston Children’s got femoral measurements of +15 on the right +11 on the left.  And I have no idea why they got such different numbers.  I didn’t see the radiologist measure it, but I saw Dr. M do it.  My gut says Dr. M is more accurate because he is untwisting or twisting femurs and hip sockets for a living.  I don’t live anywhere near Boston, so I can’t ask Dr. M about it.  And they did an MRI at HSS with a rotational component and my femoral version was +15 supposedly on the right.  MRIs are notorious for under-measuring femoral version.  Dr. Mayo got mid-20s for both femurs, but he estimated it because he couldn’t open up the measuring software that came with the CT.  So, I’m guessing my femoral version on the right is closer to 25-30 than it is 15 because Dr. Mayo and Dr. M got a similar measurement, and I trust them over a radiologist.  That was part of the reason he didn’t derotate my femur.

The other reason he ended up not derotating my femur is that my greater trochanter was huge, much bigger than he anticipated.  Post-op he told me that I had the biggest greater trochanter of any non-Perthes patient he’d ever seen in his 10 years of experience.  He said my hip popped out of the socket at 35 degrees of external rotation because the greater trochanter leveraged my femur out of the socket.  I retore my labrum doing a passive external rotation stretch called the butterfly stretch.  I put no force on my legs at all.  It retore that easy 2.5 years post hip scope.  I think this is the other reason he decided not to derotate my femur.  The damage appeared to be from the greater trochanter, not the anteverted femur and socket.  He continued to say that if I had a total hip replacement without the trochanteric plasty, my hip would dislocate anteriorly within a month.  Prior to surgery I told him my right hip was popping out of the socket about once a week, usually when I got up from a chair.  I had to stick my butt out and waddle to get my right femur back in the socket.  Sounds fun right?  He told me it was my IT band, but after surgery, he said I was likely having lots of hip sublaxations.  And he told me that I couldn’t externally rotate my right leg past 35 degrees without it sublaxing.  So when I told him how flexible I was in ballet he was like O.O  I had pretty good turn out and all the splits, so I guess the sublaxations only became painful when the hip labrum was torn.

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This is how I retore my right hip labrum

I would like to add that I think Dr. S is brilliant, and he’s very skilled, but I’m just sharing my experience here.  I don’t know what my hip looked like once he got me open, and I certainly don’t want an FO if I don’t need it.  I’m hoping this surgery will be successful.  I’ll know in about 5+ years.  But given everything I’ve been told from other doctors, I think it was reasonable to be scared, confused, and upset in my situation.  I would have liked to have known prior to surgery there was a chance the FO might not be done.  There are a lot of pros to not having the FO done.  It’s a much shorter healing time.  My tibias are more twisted than the femurs, so I was really worried if he derotated my femur it would exacerbate the twisted tibias, and then I would need a tibia osteotomy.  Since I only had borderline version problems, if I had a complication from the FO, I might regret having it done.  If my surgery fails for the 2nd time on this side, it will be obvious the rotational issues are a problem because Dr. S fixed everything else.

I’m trying to think positive because thinking negative is too depressing.  I can’t live my life everyday thinking that if I’m not careful enough my hip labrum will retear.  I’m not doing any exercise besides walking and swimming for the rest of my life.  Dr. M told me that due to the EDS, it doesn’t matter how well he fixes my hip, if I’m not careful I’m going to reinjure it.  So yeah, no more ballet for me.  I was training to be a professional ballet dancer as a kid, and I did it off and on as an adult, and that’s how I got my first hip labral tear that ended up setting off a cascade of joint problems.  As soon as one joint gets better it seems another one gets injured.  That’s the beauty of Ehlers-Danlos Syndrome.  I finally got over it and realized I’m going to have to live with chronic pain every day for the rest of my life.  It is what it is.  That’s not pessimism, it’s reality.  I had to let the person I used to be die, so that I could be reborn as a new person.  I’ve had friends try to tell me not to think that way, but I needed to accept reality and stop waiting for something that was never going to happen.  I spent 4 out of the past 5 years waiting, crying, begging, hoping, pleading with God to take away my chronic pain, and it didn’t happen.  So believe me when I say I spent years hoping the pain would stop one day.  And I let life pass me by in the process.  I’m focused on making the most out of my life given my current health situation.

I also get off crutches in a week 😀  I have a shoulder injury, so crutches have been the bane of my existence these past few weeks.  And my left hip is flaring along with my whole spine (I have degenerative disc disease due to EDS).  So I’m super excited I’ll be off them soon ^^  Bouncing on my fitness ball for 10-20 minutes a day has been one of the only things keeping my spine pain under control.  It was really bad 3 weeks ago, and my doctor started me on a medication for nerve pain, and it helped a lot.  I can’t take NSAIDs either because it will inhibit bone healing.  So I was also give Voltaren gel to put on my spine.  Systemic absorption is only 10% so S said it was okay.  At one point I was in bed for 23 hours and I couldn’t sleep or eat due to the pain.  All I did was bawl my eyes out.  I was also scared because I’m not even 30 and my spine pain is so bad.  Spinal fusions increase the degeneration of adjacent discs, especially in EDS, so if I have one spine fusion I’ll need like 5.  It’s usually not this bad because I have managed it with PT.  I’m not ready for more surgery, so I’m hoping to postpone it for as long as possible.

I will leave you with a picture of my right hip.  The screws will likely come out six months after my surgery.

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12 thoughts on “I’ve Been Screwed (My Hip That Is)

  1. Thank you for the kind thoughts 🙂 Yes, it’s been a very painful two months. I have needed a lot of Kpop to get me through it XD But once my right hip heals, the left hip will get better (has lots of tednonitis issues), and I can go back to doing physical therapy for my spine. I’m doing a lot better emotionally than I was several months ago. I’m in several hip and EDS support groups as well. It helps to know that others are going through the same thing. Makes the pain more bearable in a way.

  2. Oh my goodness! Hope you are hanging in there, that’s no fun at all :/ Three screws in your hip?? Scary. I am glad to hear you’ll be off crutches soon though, and that the screws don’t have to be in for very long. Wish you a fast recovery!

  3. Thank you for the kind thoughts Victoria 🙂 My health issues tend to work themselves into my writing, and I end up creating characters that have to struggle through mental health and/or physical health issues XD I’m doing better every day, so I’m optimistic this year will be better ^^

  4. Good luck I have tore the labrums on both hips and doctors lookes at me like I was crazu. I have had a labrum repair on my left side and when they got in there they found out that it was tore over 200 degrees . After the surgery I think I retore the labrum although I was toldcthat it was imposible to do as I still have pain but it is alot different. I do know what it isto go into surgery and wakeup to findout what you thought was going to be done was not. I crughed my left foot and on the 7th surgery I woke up and found out that the tendon release that was suppose to be done with everything else was not done he said next time time has never come. All I have to say is keep your chin upcand keep pluging away. Ci was about your age I was 24 when I had a backhoe crush my left foot. I went from never keepingcmy foot to never walking to never going going back to work and I was able to crush all three of them. Good luck and keep moving forward.

  5. Just stumbled upon your blog as I was searching for recurrent labral tears of hip. I am currently awaiting my THIRD labral tear surgery of my left hip. Just received results from an Arthrogram MRI yesterday. I have been in tears every since, knowing I have to go through this surgery and long healing process once again. Just curious how you’re doing and how your third procedure went. Hoping you have had great success since, and hoping the same for myself.
    Thank you for sharing your story.

    • Repeated failed surgeries are so scary 😦 *hugs* I wish I could say I was doing great, but my third procedure kind of failed, unfortunately. I’m definitely better off than I was before surgery, but I believe I injured the labrum again, and my hip still partially dislocates. I was doing good until Jan. 2015, and I accidentally did a pivot (external rotation) and felt that familiar sharp pinch in my hip. I have Ehlers Danlos Syndrome, so that greatly complicates things. I would definitely seek out the best specialist you can find. You would be surprised how even very good hip surgeons do the wrong thing. You want someone that specializes in just hip scopes and does several hundred a year like Dr. Kelly at Hospital for Special Surgery. My right hip has borderline excessive anteversion of hip and socket, so the question has always been whether the socket or the femur needs to be derotated. My right hip still partially dislocates anteriorly. I work a stressful job and am not dealing with potential infertility, so I’m not actively pursing another hip surgery at the moment, but I’m still seeing specialists every few months. It’s hard and scary. I’ve cried so many tears in the past year over my right hip. Everytime it partially dislocates I would get hysterical and have a massive pain flare. Sometimes it would happen multiple times a month. My left hip has never partially dislocated, and the hip scope was successful on that side, so it’s not just the EDS that is making my hip unstable, but that is contributing to it. *sigh*

      • Thank you so much for your response. It is good to converse with people who understand the pain, frustration, and despair. I know it’s not a death sentance, but the pain is taking over my life. Sleepless nights, anxiety over yet another surgery, and just feeling like nobody gets it, is really beginning to take its toll. I have lived with pain most of my lufe, diagnosed with arthritis at nine years old, but definitely getting more difficult with age, ( I will be 54 on May 10th).
        My surgery is scheduled for May 19th, (2016). Praying for long term results this time!

  6. Hi, your blog is the only thing I can find on the whole internet that’s close to my situation. I have eds too and have just found out at 32 that I have excessive femoral anteversion in both hips, bone growths on the hip bone and impingement (cam?). I’m terrified. My surgeon has never done such complicated surgery and never operated on an eds patient. Not sure how I’m gonna cope, I have 2 kids, 10 and 8. Please any advice will be more than appreciated. Hope you’re recovering well, hugs from afellow zebra x

    • It’s scary to feel like you are on this journey alone. Not sure if you are on Facebook, but I created a group for people having femoral osteotomies: https://www.facebook.com/groups/836119759735254/ Also, you can join the PAO group (a similar surgery) because it is a much bigger group, and there are lots of ladies with EDS on there: https://www.facebook.com/groups/147992365259/ Where do you live? Not sure if a second opinion is possible for you. I got lots of opinions, and I’m glad I did because hips are very complicated. People with EDS don’t have as great of an outcome as non EDS patients statistically BUT it could still greatly improve your quality of life. My left hip is doing great. My right hip not so much, but it’s better than it was so I’m trying to put off another surgery for a few years. It’s a very long and complicated story. . . Well, the biggest reason I’m putting off another hip surgery is because I’m trying to get pregnant, and there is no guarantee another right hip surgery will fix me. I’m also dealing with possible infertility and a very stressful job (I’m a retail pharmacist), so I often get overwhelmed at times. That’s kind of why I stopped my blog for the time being :/ The remaining bit of time I have is spent writing fiction XD

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