Karen

Hi, I’m a 39 year old female who has just been diagnosed with Dysplasia after a long history of over 30 years of problems. I am very grateful that I have private healthcare, which in the UK, is amazing and I’m under a top surgeon in London.

However, due to the recover time (for both hips) and the horrendous looking treatment, I have asked for some other opinions as to why I can’t have bi-lateral replacements instead (as I don’t currently have arthritic hips), especially now the ceramic/titanium THRs have very little wear. So that’s where I’m looking for your help and stories of anyone that was able to opt for replacements instead of PAOs who didn’t have arthritis.

It all started when I was 9 when I started having pain in my knees. I was told it was growing pains. At 15, I was told it was attention seeking (as I used to run middle distance and either won, or suddenly slowed and colapsed). At 22 I had an X-Ray of my knees and that was clear (mmmm…). At 26, again, they found nothing. At 31 I was told “you probably have osteo-arthrytis” without even doing a bloody test. So for 9 further years, I suffered (wanting to be such an active person in my head!) until I was walking up stairs on all 4s. (I don’t think I need to go into other details about restrictions and pain as you’ve all suffered it!)

With no pre-existing conditions, I decided to get private healthcare and when I asked medical friends for the right surgeon to be referred to… they diagnosed me on the spot with Chrondomalacia Patellae (knees). I had no VMO muscle at all. My IT bands were extended and my cartilage cleaned up (I was left with 10% in my left and 25% in my right).

I began to be incredibly active after my knee surgery, even becoming a cycling addict and took part in a 300 mile ride in 4 days, just 6 months after surgery. However, the hip pain I was experiencing as well never went away… even after 8 months of Physio and over the next 3 years, got worse and worse to the point that after any form of exercise (and randomly without warning) it would bite me. It was also incredibly difficult to stand up after a seated position without aggressive pain.

So I’ve now been diagnosed (which was a shock considering I was expecting a bit of Physio!) and I have a left labral tear to boot. I’m now occasionally on crutches and I’ve penciled my first hip in for June 16, subject to not being told replacements will work!

Looking forward to some comments!
Karen
PS – Wonderful site and congrats on your recent donation!




Is this your story? Log in to reply to comments.

6 Notes

+ Leave A Note

  1. Jess says:

    Hello Karen

    After reading your story I felt I should chime in. I was diagnosed with hip dysplasia at age 24 and had surgery on my 25th birthday (this past December). Growing up I too felt pain in my ankles and knees. When I finally got my hips checked out, my x-rays DID show signs of arthritis in my left hip. I saw a specialist who referred me to his partner who told me about a PAO. I was all prepped and went into surgery but after the scoping, they woke me up. After scraping out the damaged cartilage, I didn’t have enough left over for a stable joint. Two days later I received my anterior approach replacement.

    Now, I’m three months post-op and am loving it! The thing is, knowing that I will have to find different insurance at the end of this year (I turn 26 and get kicked off of my parents’) and the fact that I have bills to pay, I need to get back on my feet as fast as possible. I live in upstate New York in one of the most expensive areas. I have made a decision (even with no sign of arthritis yet) to have a replacement on my right side as well. For me, I can’t afford to be out for 10-12 months on my back or recuperating with little to no income. I have an apartment, a car, student loans, pets…there is NO WAY that I’m am opting for a PAO this time around.

    I hope this is gave a little insight, for I know my experience is a rare one. Even though arthritis does run in my family, I would prefer to get a replacement solely to get back to my life quicker.

    Thanks for reading
    Jess

  2. christelle guillemin says:

    Hello Karen,

    I have a similar story! My answer is long for you to understand the options I had and the choices I made.

    I started with the knee pain when I was 12 and was told this was due to growing pain. I was a runner as well, saw a few Doctors, stopped running for 1 school yr, tried physical therapy, acupuncture … the xray showed a small part of the patella was chipped off so I had a surgery to remove it at 18. The pain never went away. I lived in France then. I dealt with the pain and was still running but always kept it to 5km distance due to terrible pain beyond that.

    I was 38 (living in the USA) when I started feeling hip pain. I saw 2 chiropractors at first, then 3 orthopedics. Had xray, mri… they diagnosed the dysplasia, I also had a labral tear, arthritis, bursitis etc… same knee & IT band issue you have. They offered PAO to fix the dysplasia and/or arthroscopic surgery to only fix the labrum. I opted for the arthroscopic surgery to fix the tear and I turned down the PAO due to my fear of this invasive surgery/recovery. I was just frightened and they didn’t insist, explaining that the PAO doesn’t always work long term and I may still need a hip replacement in a few yrs. My case was not so black and white, I could wait. Each case being specific, they couldn’t say for sure.
    The years following the labral repair, The pain was gradually getting worse in my hip, couldn’t walk without a limp, had all kinds of symptoms including my hip locking up. It got bad.

    I finally went to the best surgeon I could find in Chicago last September, upon my friend’s recommendation, to hear I had no cartilage left which was causing the bone fragments to interlock. This wonderful surgeon was direct and said he couldn’t do anything for me except a hip replacement. I was shocked and scared (since all previous surgeons told me I was too young for it). I decided to trust him and be done with the pain. I went through this hip replacement last November and cannot tell you how happy I am. I can walk 1 hr without pain, I no longer take medicine, I feel great.

    I have no regret not going through the PAO, although I lived with the pain for a few years and don’t know if/how long that would have helped. The hip replacement was inevitable, and the best for me. The recovery was so fast, I couldn’t believe it.

    The difference in your case is that you still have cartilage. I’m not sure of the protocol, insurance coverage etc since you still have the option of the PAO (which I no longer had last yr). The UK & USA have different systems. I think you should inquire with your insurance as well as insist with your surgeon, if you truly want the hip replacement. It may be a medical billing/cost coverage issue based on diagnostics.

    Good luck and keep us posted!
    Christelle

  3. Karen says:

    Jess / Christelle,
    Thank you soooo much for sharing your stories; it makes you feel like you’re not alone. Until I had posted about the links to my knee issues, I’d not read anyway about the connection!
    I know a lot of medical people here in the UK and no-one has experience of PAOs other than the surgeon I’ve been referred to, who is highly respected.
    I saw another surgeon last night (who specialises in THR in young patients) and he has said no… simply because there is no arthritis and my hip joint has very little sign of degeneration. He also knows the PAO surgeon and has said that he would only recommend PAOs if it’s guaranteed an excellent result, so I’m going for it. He’s developed PAOs over time, and has apparently refined it himself so it’s no longer the massive op it used to be.
    Surgery is June 8th for the left hip… I’ll keep you posted and thanks again!
    Karen ;-)

  4. Samantha husband's says:

    Hi, I was born with clicking hips and suffered badly with growing pains after about 8years of being past from pillar to post with specialist, I was diagnosed with hip displaysia and had PAO procedure on both hips one year after the next. They advised me that this was better than hip replacement as I was 35 at the time and would only need another replacement later on in life. I’m not pain free and walk like a penguin at times..My legs can ache a lot and recently I’ve been falling over so I feel like im in the dark as to what’s going on…..I’m sure you Will make the right all the best..

  5. Christina Hawkins says:

    Hi, I’m nearly 33years old and I don’t know what I would of done in my adult life if I hadn’t had a PAO at age 16years.
    I was diagnosed with DDH at 18months when I started walking, i then went onto have a internal reduction and subsequently a femoral osteotomy aged 3years. Unfortunately as a teenager I started to get increasing pains in my hip. I was then introduced to a brilliant surgeon who performed my PAO. Yes it was a difficult 3-4 months of my life and I was a teenager at the time. But looking back it was all worth it. I now do triathlons and compete in long distance bike rides, as well as skiing and hiking mountains. I don’t think I would of been able to do this without the surgery I had.
    I understand I was lucky as I had my surgery aged 16years but I fully recommend it and believe I would of had to have a hip replacement by now. Hip replacements are great but not until you’re at least 50years of age, I’m hoping they would of invented a new hip replacement by the time I need one!
    I hope this helps you with some decision making,
    Take care, Christina.

  6. Linda says:

    Hi Karen,
    Yes the first part of your article resonates with me. I had almost parallel symptoms and dx. Finally at 46 I was dx after I was dragging my foot along and could no longer walk or stand.
    I assume you mean PAO surgery. I know many have opted to try the PAO after age 35 even some as old as 49. I think it’s very specific to the individuals pathology as whether you would be a candidate. I now have two hip replacements. I still struggle because waiting so long to correct I dveloped spinal compensation issues. I also have some hyper-flexibility issues as well. Some have said anyone with hyper-flexibility or EDS issues can have longer healing times. We also have compensational issues after surgery. My one hip was far gone so that wasn’t even an option and my other developed pain after the first THR and just kept progressing. I opted to take a bit premature because I felt like my spine was going to buckle. I didn’t feel two years would make a diffrence. I also asked about a PAO at age 49. My surgeon’s opinion was that bones do not heal as fast as a younger person and there are more risks to a PAO. For me he said I would most likely end up with a THR down the line anyway. He felt going through an extensive operation like a PAO would be too much trauma for me and that since total hip are lasting up to 30 years that would be a good choice. That should get me to 80 or possible never replacing my hip again.:) You are younger.:) As a support group we started a Adult Hip Dysplasia Rehab Strategy page on FB. Please join us to stay strong and keep you moving forward.

Leave a Reply

  • Social Media Links

  • Translate Link

    Para ver en Español Click Aquí

  • SubNav Menu

  • Latest News

    Latest News

    view all

    New Guidelines for Evaluation and Referral of DDH

    Jan 17

    After 16 years the American Academy of Pediatrics has updated and revi...

    A recent study confirms, adults with hip dysplasia...

    Aug 23

    An important research study reaffirming that hip dysplasia is a major ...

    Landmark Research Study

    Aug 18

    A landmark research study from the International Hip Dysplasia Institu...

  • Latest Stories

    Latest Stories

    view all

    Lennie

    Jan 23

    The day after Lennie arrived she was diagnosed with hip dysplasia, 8 w...

    Jodi

    Nov 30

    HAVE A QUESTION: I am 43, have left hip dysplasia that was diagnosed o...

    Jen Lesea-Ames

    Nov 10

    Advocate Spotlight Jen Lesea-Ames, Founder, The PAO Project and Edi...