Lauren

unnamed

My story with Hip Dysplasia began in July of 2014. My hip suddenly hurt, and it hurt really bad. The pain was constant … it hurt when I stood, it hurt when I sat, it hurt when I walked, it hurt when I ran … and it was not going away. My hip was constantly clicking and felt as if it was catching on something – especially when I sat for a long period of time.

For as long as I can remember, I ran almost every day. When I wasn’t running, I was kickboxing, playing soccer, spinning or checking out the latest workout fad. I had been playing co-ed soccer and at first attributed the pain to a hard collision with a male goalie – which later I discovered was not the case. To say the least, my 28-year-old body was accustomed to bruises, aches and pains. But this, this was different. My pain progressed over the next few weeks. There were some days where the pain was chronic and all-consuming – other days I felt okay – not great, but okay. There were a few days where the pain was debilitating making it almost unbearable to sit, stand or sleep comfortably. And, running was completely out of the picture. This, for me was one of the hardest things to accept. I knew it was time to see a doctor.

The journey to getting properly diagnosed was long and stressful. From the first doctor saying he had no clue what was wrong with me, to MRI’s and X-Rays, failed cortisone shots, physical therapy treatments and a drawer full of mind-clogging paint meds … it had been a long year. It was confirmed after an invasive MRI that I had a tear in my labrum on my right side. My next doctor then recommended me to Washington University Orthopedics in St. Louis to schedule the repair surgery. When I arrived and once again did more X-rays I was told I indeed have a labral tear, but I had a much bigger overarching issue – a rare condition called Hip Dysplasia – to my surprise not caused by soccer, but by genetics. HD is a congenital problem, but the symptoms don’t always show up in infancy or childhood. Even though there is a tear in my labrum, fixing the tear would not fix the root of the problem. My lack of coverage over my femur was the problem. Over time, my joint would become arthritic much faster than a normal sized socket. Hip dysplasia includes a group of disorders that have deformities of the joint. Most commonly, hip dysplasia is characterized by a “shallow” socket that does not adequately cover the femoral head.

So yes, to answer your question, like many dogs and many babies … I have hip dysplasia. The doctor then told me I was an excellent candidate for Periacetabular Osteotomy (PAO) surgery (My first reaction was, what the **** is that?) So to give some background, PAO surgery is a hip preservation surgery. This surgery involves cutting the pelvis around the hip joint and shifting it into a better position to support the stresses of walking. After the hip is re-positioned, it is held in place with screws until the bone heals. The nurse also mentioned it has the most difficult recover of any orthopedic surgery … awesome.

Even though the surgery sounded extremely invasive, has a very long recovery and sounds, well terrifying – I went ahead with it on July 9, 2015. I strongly believe the positives have outweighed the negatives. I had a 4-day hospital stay and three months off work to recover. The long road to recovery consisted of 4 weeks of sitting in a recliner watching Netflix, learning to walk again with a walker to crutches to a cane, and finally completing 6+ months of physical therapy. I was off crutches by my 30th birthday in October, and that was my big goal – I didn’t want to be a 30-year-old with a walker, I felt old enough as is.

Recovery was not easy, not only physically … but maybe even more so mentally. I was very lucky to be surrounded by family and friends that visited, cooked, sent gifts and were willing to be chauffeurs for me for a few months. It meant the world to me they were there for me – even though I know I was not the most pleasant person to be around.

All and all, the year of big struggles and small successes, was more than worth it in the end. One year later, I have gotten back to an active lifestyle and am no longer constantly bothered by pain in my hip. I no longer dread a long car ride, store my favorite pair of heels in the back of the closet and experience pain from walking around the mall for too long and/or sitting at my desk at work for too long. Even though I am not able to run the mileage I had grown accustomed to, going through the difficult experience has made me really appreciate the things I am able to do now pain-free, turns out low-impact activities like biking, yoga and walking aren’t so bad after all.

Going from being extremely active and healthy to being in constant pain, to undergoing three hip surgeries in the past two years has been quite the whirlwind. My scar – something that at first I was mortified of – I now see as constant sign of how I strong I am. I went through one of the worst experiences of my life, and persevered and overcame that challenge. I came out of it a stronger, more appreciative person, that sweats the small stuff a little less than I used to. I am glad I have that big, ugly scare to remind of that




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  1. steph says:

    Sounds exactly like my story but after my 2 hip arthroscope i m still in pain, they say there is nothing else they can do for me. I too have a shallow socket and have clicking all the time in my right hip! Now I have back issues that have arisen due to overcompensation! Its a vacuous cycle.I’m glad youyr story ended without pain

  2. Jillian says:

    Thank you for sharing your story. My journey to obtain a correct diagnosis started in 2011. I went to my PCP and was sent for x-rays have been diagnosed with fermoral acetubluar impingement (FAI) and was referred to an othropedic surgeon. The orthopedic surgeon diagnosed me with bursitis without looking at the x-ray provided because he could not access the film on his computer. He told me to increase my advil consumption and live with it. This visit was not covered by my insurance and I did not pay him. So off to another orthopedic group I go! They took his diagnosed at face value until the cortizone shot failed. The PA did a ultrasound on my right bursa sac and said hey you don’t have bursitis! So just live with it again.

    I fell in 2014 and 2015, I believe due to the hip dysplasia. In 2014, I cracked a molar and required a root canal and in 2015, I fractured my right patella which required surgery. I have been on disability since because my profession’s physical requirements of driving all day long and moving heavy pharmaceutical marketing materials.

    Currently, I am receiving shots and pain meds rather than surgery because I am afraid and my children need me to be 100%. I was finishing my Master’s when Cigna decided that I’m no longer disabled and cut off my benefits. I was planning on obtaining a sedentary work at home job within the 24 month own occupation period, but now I’m spending time fighting with Cigna rather than returning to an acceptable position for my condition. Never mind that I can’t ski, hike, horese back ride, run, walk without pain, or keep up with my children anywhere. Does anyone have experience with LTD and hip dysplasia? thanks

  3. Sonya says:

    I was diagnosed in 2012 and it has been a long and very painful road for me. I had been going through severe pain that made working almost impossible. I would cry would noone was watching out of pure anger. I was stepping up from a housewife to actually working to pay the bills before I got diagnosed. I remember now looking back on my childhood that I would have issues with my hip popping out of joint and me having to beat it back in. And I remember being able to get in positions noone else could. I never thought anything about it then. And after I finally found my ortho doctor and was working to get my weight down to make recovery time less, my hip stopped wanting to move at all at times. I would be walking and the left would just stop. Anyway, I had my surgery just 2 years ago in 2014 and my doctor said it would not be good for me to get the hip replacement since I was young and I would probably need many more before a very old age. So he did something where he broke the hip in 2 places and reset it and put screws in. My hip is doing rather good on the left, but the doctors who did my surgery messed something up and now I have no feeling in the whole left top side of my thigh. I have been told it is nerve damage and can’t be corrected. It makes the pain in that leg bad and it makes me not want my right hip done (its almost as bad as the left). And then I have 4 beautiful children to whom I am the proud mother of and I found out it is heratitary. I had my 3 oldest testest (got to get youngest tested) and so far its just my oldest. But she has a worse case than me and she and I are both scared to let any doctor touch her after my bad experience! I had went to other doctors about this and chose my doctor because he said he had dealt with this issue before and many many years before he had a bad case before he knew enough about the condition. So I trusted he had perfected it before me but now I wonder if I was used as a test subject. It is weird that in less than a year after my surgery he moved away. He knew within a few months after my surgery that I had issues and he said it was just my muscles but did not let me finish physical therapy per their request. He basically wrote me off and said my bones were healed. Well how about the nerves and muscles he cut through, that by the way weren’t the ones we had discussed before surgery. He told me I would have a cut down the side of my leg and I woke up from anesthesia with a cut down the from from the hip to down the thigh. And now thanks to him who also had one or two other doctors in the room with him supposedly, I have unreversible nerve damage along with fear of getting my other hip done or my daughters hips done.

  4. Nikki says:

    My right sided hip pain started in the same way – suddenly, and severely after running, age 28. I had a scope in 2001 to excise a chondral flap, but it never fully recovered. Now, age 44, it is worsening – my labrum is in bits and I have paralabral cysts and acetabular sub chondral cysts. My only option is Total hip replacement. A couple of months ago, I tore the labrum in my left hip too. My left acetabulum is very shallow and I am waiting to hear if i am suitable for a PAO, but given my age, this may not be an option. Sixteen years of physics, various surgeons, scans, injections, and I have got nowhere. I am so fed up now.

  5. Peac says:

    Investigating the possibilities of Stem Cell therapy might be worth a try.
    There is an outfit called xxxxx doing some very hopeful work.
    They have a website and blog. It is the oldest outfit for this work.
    They are very honest and upfront with their evaluation and opinions.
    You are at a good age for stem cells Unfortunately my age along with the level of my disease did not make me a good candidate
    Good luck

    • IHDI says:

      Here is a message from our Medical Director: while stem cells hold promise for many disorders, they are unlikely to benefit infantile hip dysplasia. Stem cells may be able to rebuild absent or deteriorated tissues but none of the tissue in DDH is absent or deteriorated. Dislocated hips in infants create deformity that needs to be corrected with braces or surgery. This is similar to correcting teeth that are crooked. It is unlikely that stem cells will benefit crooked teeth.
      However, stem cells may help prevent degenerative arthritis by strengthening or replacing joint surfaces that have had years of abnormal wear and tear.

  6. Lisa says:

    Interesting how all of yours started suddenly. Mine grew worse very gradually over time. I wonder if it isn’t something else. Is hip displaysia the same thing and having different length legs? I thought it was different, but something I read on here made me question that maybe they are the same?

  7. irina says:

    My daughter in law was diagnosed with hip dysplasia with a right hip lateral tear. She was told that she would need to have surgery. It is very helpful to read everyone’s comments. we are in the process of choosing a surgeon. Could you please share with us who would you recommend and who you had a bad experience with.Thank you.

  8. irina says:

    Sonya , who was the doctor that operated on you

  9. Lauren Ziegler says:

    Dr. Clohisy at BJC healthcare in STL was a great surgeon.

  10. Kari says:

    I was recently diagnosed with hip dysplasia and will be going for PAO surgery on both hips. These testimonials and comments help as I am terrified. I’m 40 years old and very fit and active. I have been dealing with the onset of osteoarthritis in my left hip for 2.5 years before this diagnosis. Last year I was in extreme pain as a result and unable to walk upstairs. Similar to Lauren, cortisone and lubricants were useless. Although I am going for the surgery, I have also come to manage my arthritis pain extremely well, thanks to the best medical professionals and my own will to stay healthy and fit. Chiropractic care from a heavily sports-rehab focused chiropractor literally changed my life. He has me in perfect alignment which takes so much strain off my hip and he’s given me skills and tools to manage – I do chiro exercises daily. Hope this helps anyone else who is dealing with such pain. It’s terrible but I’m proof it can be managed.

  11. Allison says:

    Lauren, you and I had the same doctor! And I agree. Dr. Clohisy is awesome. Check out my story here, too.
    http://hipdysplasia.org/patient-stories/adult/allison/

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