Hello Fellow Sufferers,
I am a 53 year old Japanese/American living in California. Yes, we have the best weather in the USA and thankfully it only gets down to the 50’s, on an average cold night, which for us suffering from our condition know that cold is the enemy.
I was recently diagnosed with Hip Dysplasia, in both hips, after numerous trips to the Primary Care Physician, Physical Therapy, Rheumatologist, and finally a Joint Specialist who made this diagnosis. So now I’m in the exploratory stages of what to do next.
The Joint Specialist definitely recommends a hip replacement, at some point in my life. Of course being 53, it’s not the opportune time with the average 15 year lifespan for a hip replacement however, the opposing solution being constant pain and discomfort, I feel like it’s time to roll the dice and go for surgery.
I own my own business and travel extensively. In fact I’m headed to Geneva, for 2 weeks, and am a bit concerned if I’ll be able to endure without my PT close by but heck, it’s Geneva….I’ll manage. Cue violins…lol
My work is quite physical and requires my body to be in good, maneuverable shape. Lately, I can barely walk let alone bend down. My limited hip movement is really crippling me, at this point. I don’t need a cane or a walker but when I go shopping, you better believe a shopping cart is my best friend. I call it the walker in disguise. I’m sure a lot of you can identify with the feeling of being too damn proud to use a cane or walker, even if you have to hobble all over the place. It’s really humbling, having a physical handicap, isn’t it?
I came across this site in search of answers and thank God for people like all of you, willing to share your stories and experiences and for the creators of this Institute (Larry the Cable Guy, really?!). I truly believe in helping out your fellow man especially by sharing information and experiences. So thank you to all who have posted and unselfishly shared your pains and triumphs.
I hope to be a contributor myself, one day. For now I’m going to continue to absorb, as much as I can, and continue to pursue the best solution, for me. I’ve never had major surgery, before, and I know this procedure is done all the time but after reading the info, on this site, I realize that the hip replacement procedure somewhat specialized for our condition and that’s why I really want to make sure I understand everything I’m up against and how to best qualify a specialist to perform this procedure.
Best of luck to all of you and thank you for your generosity and time!

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  1. Linda Bleck says:

    Join some of the closed hip dysplasia forums on FB if you have questions. Many will tell you who to see in your region for dysplastic hips. I had mine at 46 and 50. They get more than 15 years now out of the hips with proper placement and patient dedication to a strengthening plan for dysplastic patients. They can also help you with overall recovery questions.
    Don’t let other parts of your body suffer.


  2. Troy S says:

    Hi Linda,

    Thank you so kindly for your response and suggestions. I use FB for silly stuff but now it’s time to get serious and get some useful info out it! Haha I’ll look into it and let you know if I have any questions.
    So you had both of your hips done? I fear I am going to need to, also. Was one far worse than the other, therefore the gap in time?
    Thank you again, Linda. Really appreciate you taking the time to post.

  3. Linda says:

    Hi Troy,
    Sorry I just saw you reply. It was sij and lower back pain that really was the pain generator mmost of my life. I had loss of function, terrible nerve pain at night, and could not walk at time of dx. I was still working full time and coaching volleyball. I could play golf too, 7 handicap :). I only used motrin and aleve for the pain ,but then my husband urged me to seek another opinion after PT made it marginally better for 6 months. I had a wrong dx four years prior, minor arthritis in the back and weak core was the dx. So when I went back to a hip surgeon after seeing other surgeons and pain management I thought I’d get the same response just minor. The hip was mildly dislocated- subluxed is what they call partially dislocated on the right. He gave me an in office injection that day set me up with an MRA in about two weeks with a steriod injection to make me comfortable. He said my rt hip would need extensive reconstruction as over 50% was covering , I had cysts, tears, a tendon tear, and almost bone on bone. The labrum was 3x normal thickness. He asked how long I had been in pain I said forever with a smile. He said no really and I replied “Yes really, I am tough.:)” They replaced 8 months later. I played golf up until I could not take the pain, I also continued strengthening. So it was replaced and then 3 months later they discovered I had foraminal stenosis. They decompressed that 6 months later. My left hip became very painful. It was doing a ton of work and biomechanical changes with the new hip just threw my entire body off. The hip was slowly degeneraing but not quite ready for replacement. I really tried to get stronger, lost the surgery weight, did restorative yoga, and strengthened to avoid another hip replacement but my spine felt like it was ready to pop, so I opted for the replacement sooner than later. Flash forward I just had a spinal fusion4.5 months ago. I may have a genetic component to my story. I am being evaluated for dysautonomia, POTS, and EDS. I just have too many joint issues along with the crap hips. I do not want to scare you! My story I think is unique. I deal with a lot of pain, but I decided this year at 53 to retire temporarily as I work for myself. I try to help others with this condition. I do a lot of Eastern medicine practices, diet, accupuncture,continued physical therapy for the extenuating spinal issues and post surgical pain management.Steriod injections and ablations work marginally on me. If you look at me you would say “Her? She looks completely normal!” Know one believes me how much this has affected me outside of our closed forums. I tough it out and put a brave smile on my face. I deal with the issues as they come and try not to get too far ahead of myself. I have learned what I can and cannot do. I accept the pain and deal with it best I can. I am learning to be a chronic pain patient as I have fought it for the last five years and that is not working for me. I really advocate for myself and look for answers. I hope your journey is uncomplicated and you can find peace. Men seem to do better with this.:) There are 3 hip dysplasia closed forums. Go on them field your questions. We are a nice bunch and very helpful. At your age I don’t think you’ll want the PAO ,but CA has some very good surgeons that deal specifically with dysplasia. Stanford I know has a very good clinic. Take your time . Second opinions are very good. Get the right surgeon!

  4. Troy says:

    Hi Linda,

    No worries, we all have lives to live and I just appreciate anyone who spares selfless time to help others. Wow your journey is quite intense! Yes, it can be very scary and a bit discouraging, if I let it, but perhaps the way to look at it is to be thankful to be able to receive this kind of first hand information to better prepare myself for my journey.
    My Joint doctor asked me the same thing, how long have I had pain and when I told him, not necessarily “forever” but a damn long time, he said I must have high pain threshold. I know my Dad did so maybe I do too.
    Perhaps as brave as it sounds it might also be a bad thing, just living with pain and not really allowing my body to tell me it needs help. The one thing I am definitely setting aside, is trying to be a “man” about it and just toughing it out. I can see that will only get me into more trouble, especially in this situation.
    As you know there are many approaches to anything and I’ve been advised to try Yoga and holistic meds. Being of Asian descent, you better believe we have our own cultural approaches! I’m honestly willing to try anything! I mean what do I have to lose but I also don’t want to lose precious time.
    I’m a business owner and fortunately have some flexibility in my schedule however, retiring at 53 is not in the cards and I still need to be able to work on my feet.
    Thank you again for sharing your journey. It’s crazy how sharing with complete strangers but with a common cause can be so powerful and reassuring. I’m still very new to this but I’m super encouraged, so far. Thank you again, Linda! Wish you the absolute best!

  5. Tina says:

    I am a 54 y/o female who was diagnosed with bilateral hip dysphasia months ago after suffering for 3-4 years undiagnosed. I had been seen by management, neurosurgeons, orthopedic surgeons all misdiagnosed me with L-spine issues dispute my constant complaints of severe groin pain, inability to sleep, which has led to now every step I take causing pain that’s unbearable. It was when I decided to see a new primary care doctor, he immediately did a L hip X/ray which showed joint space narrowing & a CT scan confirmed severe osteoarthritis relating to congenital hip dysplasia. I was sent to a joint specialist who did specialized X-rays, & a CT scan for measurements. I need bilateral total hip replacements ASAP.
    I am overwhelmed, I was a RN in a trauma ER, I has run 20-40 miles per week until about 6 months ago. I now feel lucky if I can walk for 3-5 minutes. The quality of my life has been significantly decreased, I am very depressed. I have one grandchild who is my life, she’s turning 5 and she lives with me. I have not been able to do anything I want with her, she’s had her own issues after a severely traumatic birth injury causing a brachialnplsxus injury to her L arm. She will have the challenges of this injury to deal with throughout her life, yet being so young she’s compensated well.
    I am scheduled for first THR 08/01/18 , & although I am very glad to be getting this done I am nervous. I had a spinal cord stimulator put in 02/18 relating this pain to my L-spine, this will have to come out sometime yet after both hips are done.
    My problem is not weight gain it’s weight loss, I was always on the slim side 115-118 at 5’4” yet in past 3-4 months have gone to 95-98 pounds, with no reason? My activity level is 1/16th of what it was before, yet I think depression has caused loss of appitite idk honestly anyone else have this problem? The surgeon did protein & vitamin levels saying I was underweight they came back all normal. Appreciate reading others stories & knowing I am not alone.

  6. Janice Campbell says:

    Hello all! Thank you for the stories. I’m glad I’m not alone in this. I was born with congenital hip dysplasia. I was born in the Philippines so my doctors we’re not familiar with a breech birth and use my legs to pull me out of my mother causing my problems.
    My family tried to fix my problem when I was around five years old and the doctors in New England put me in traction where they use weights to try to pull my legs down to the sockets. They moved about an inch when my family decided that it was enough. We moved.
    I never had problems with my hip dysplasia until I was around 17. I ski trip caused my legs to stop functioning correctly and I was in pain. It took a few days to get myself hobbling around again and after a couple of weeks I was fine. Life continued.
    I am now 53 years old and have experience the worst symptoms I’ve ever had. I’ve used wait to help me I am now 53 years old and have experience the worst symptoms I’ve ever had. I’ve tried to keep my weight down to help my legs and knees. It has worked so far with a few times of pain during my life. I just accepted it as part of my life. But , the pain now is different. I feel the pain when I am trying to sleep. So, I’ve lost sleep. It is like a throbbing pain. I can’t stay in the same position very long because it wakes me up to tell me to move. I also can’t sit long. The most comfortable position is standing. BUT, my right leg gets tired because I favor it since it is my left side that the pain comes from.

    If anyone has ideas to help me cope so I can sleep, I am so open to your ideas. Please.

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