Perthes Disease - 20+ Years Post-Op - PROBLEMS

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Hi, My name is Dan and I live in Cleveland, Ohio (USA). After multiple wrong diagnosis' from doctors when I was 8 years old, I finally found a doctor at the Cleveland Clinic who confirmed I did in fact have Leg Calf Perthes. I have read many discussions and have heard several different types of operations for those with this condition.

To make a long story and timeline short, I had the surgery when I was 9. Was laid up in bed for about a year and to paint the picture...imagine laying on your back with your legs spread..both legs were in a cast individually from ankle to slightly below the waist, with a bar in the middle separating the 2 legs. I was told I had an extreme case of Perthes, as there were other complications involved. Walking was a 85% chance, running was less than that, playing sports or physical activity was below 50%.

To say the least, I grew up and worked my tail off to overcome all the obstacles thrown my way. I played football and basketball all through high school and continued on with football at a collegiate level.

Although, this post is not about my accomplishments, I just wanted to paint a picture that described what a pretty normal life I lead with this condition.

I'm 30 years old now, and over the past 6 months or so I have for the first time really remembered the pain I felt when I was a child...maybe worse. I'm curious to see if anyone can relate or has/currently is going through what I am now...

My hip continues to lock up to the point where I can't walk..at least once a day. The pain is at the top, center part of my hip joint as well as near the groin. It takes anywhere from 5 mins to sometimes 4-5 hours for it to pop and go back in place. I am afraid to go to the doctor bc I guess I'm sort of in denial and don't want to face the fact that another major surgery is on the near horizon.

Can anyone relate? Your feedback would be helpful and appreciated! Thanks for reading!

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  • Posted

    Hello Dan,  I hope your know that if it wasn't for your strong will you would never have come this far.  Really you could have just given up but you didn't.  Anyway yes I can relate to some of your story, laying on my back with a body cast from the top of my chest to my toes with the legs wide open and going for adjustments every few weeks. These are huge walls to get over. And they all have sooner or later the emoiional part that shows up. LCPD is an odd one for sure.  There is so many degrees of bone formation or lack of, and the hip socket. Reguires both the hip joint and the socket to fit like a grove, ours donot.  Yes as an adult woman I still have pain, lots of it. Also when the hip is out it causes knee pain, I have that to. And yes I understand, my hip also will lock up, cant move or bend, or sit.  It might be better the next day or next month or longer. Yes the groin pain can be intense. I was told caused by the tighting of the groups of ligaments around the hip and lower back. I hope you don't have to have another surgery, but I would make sure you go to a doctor who actually knows something about LCPD.  Usually I have had doctors have to go look it up in the book, we really would be more protected by using a doctor who does a lot of these cases, in other words I would not go to a doctor and be the first patient he does heart surgery on.   I don't think you are in denial you are just remembering all the things that happened in your past.  I live in CA so I can go to UCLA.  Perhaps there is something like that in Ohio? I know you have worked very hard to get to were you are as I have done.  Dont stop now, I know you can continue,  Take care and I wish you the best.  
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    • Posted

      Thank you for your kind words of encouragement and I appreciate your insight! You're right. It's clear I need to find see a specialist whps experienced in this field. I truly hope your struggles improve day to day and I'm sure by the sounds of your demeanor, you don't strike me as one who will give up either! Best of luck to you!
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  • Posted

    Hi Dan. I can relate to what you are going through right now, although at a younger age i was not in a cast but did have surgery to repostion my femur.

    I'm 20 years old and was diagnosed at the age of 7 with bilateral perthes. Lucky for me my local GP picked up on it straight away and my surgoen was impressed with his knowledge.

    On October 6th this year i had my first hip replacement. My surgoen gave me the choice of "When i say its happening, its happening". I immediatly jumped the at option due to terriable pain.

    In some ways my surgoen couldn't understand why i was getting so much pain in the way i was discribing. Feeling bone chips getting stuck inbetween my joint being one of them. (Osteoarthritis, deformed hips). Once hip was cut out, it was clear that there was cracks all over the top and xrays would have never picked it up.

    I honestly think its up to all of us idivdually wether "the next big op" is a go or not. 

    I would advise a check up for yourself, but also for records.

    The locking up of your hip? In other words stiffness with pain and you can move your legs? I had this too. The more you push them there seems to be a limit where its impossable.

    Good luck Dan, would love to hear any updates.

    Laura

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  • Posted

    Hi Dan, thanks for posting this as you have been an inspiration! I too was diagnosed at age 8 and was crutches-bound for 8 months. The result left my right femoral head flattened and anvil shaped and my joint socket misshaped. My LCP history is not even in the same solar system as what you had to endure but I can still relate. I am now 61 and I have experienced pain and stiffness throughout my very active life.    Faith and a strong spirit has allowed me to play all competitive sports through high school into my adult years. Over the last ten years I have skiied, played competitive tennis, golf, mountain hiking and soccer and have most recently coached and refereed high school basketball and all levels of soccer. To do this, I have had to perform a stretching regimen of up to 45minutes to an hour before each activity along with lots of prayer. The inevitable loss of cartilage and onset of arthritis in my hip joint has caused me (with great apprehension) to finally bite the bullet and get the total hip replacement I've needed for many years! It's been 4 weeks since successful surgery and I am driving, walking stairs unassisted, working the eliptical and stationary bike and performing chores in concert with an aggressive PT rehab. I am pain free but am working to free myself of the numbness, tightness and inflamation that exist post surgery in my hip joint. I was promised and expect a full recovery and have been told I can resume the same activities pre-surgery with exception of jogging on pavement. Please let me know if any of this is helpful and will be glad to respond to you or anyone else and assist where I can. This forum has humbled me and I actually feel blessed as my great challenege in life has not been so daunting after reading what so many fine folks have had to endure! God bless you Dan and all others as you face this formidable adversary! Lou
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