Lower back pain years after Lcpd

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I was diagnosed very early around 5, so I just had to wear a brace with yearly trips to the Shriners hospital for ortho checkups, the only issue is my right leg is slightly shorter and have had to wear a lift in my shoe. My question is, has anyone had lower back issues possibly due to the Lcpd? I've had lower back issues for several years, I'm 36 is it possibly just older age. Just wandering others experiences.

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  • Posted

    Hi Tonya79, I understand what you are talking about.  My right leg is also slightly shorter. I have found out that this slightly difference makes a HUGE difference. The body is such a wonderful machine that this difference causes it to try to compensate.  Yes this will/coud cause back issues. It causes the back/spine to not be in alinement.  I have found some relief in finding a Good Chiropractor, who trys to adjust the body back to a less painful and correct position. Remember like doctors, chiropractors can be wonderful for you or NOT the one for you.  You must be careful. I have also found a foot lift or shoe pad helps to restore the balance in the back.  Also helpful slow back stretching.  Sounds like you are in touch with your body so instead of this getting worse as you age I am sure you will keep a handle on it and will find a happy middle where you are in the least amount of pain.  Yes LCPD causes many other issues in the body.  I wish you all the luck, love and happiness for finding the answers that are for you.
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    • Posted

      I think I'm going to have to go see someone, I've never been to chiropractor before but I'm to the point of trying it. I don't wear the lift in my shoe as much as I should. I know I'm out of whack. Thank you, it's nice to finally have a place to talk about Lcpd.
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  • Posted

    Hi Tonya - not it's not just older age I spent too many years being told that. Hope you don't mind me telling you my story.  Over the years My love of yoga has helped me with various issues to do with back, knee and hip pain.  Then I had a slipped disc 7 years ago and Pilates became my lifesaver, combined with lots of walking, superb  treatment from the NHS with physiotherapy, exercise classes, back classes and acupuncture.  So I became very 'back aware' and always took precautions.  Three years ago (aged 62) my hip hurt so much and I kep being told "old age" until I went to see the GP. He sent for  for an x-ray for me to be told I had had undiagnosed therefore untreated Perthes disesase as a child.  In March year it was so bad I was sent to see a surgeon who said I needed a hip replacement because of osteoarthritis and my good hip was

    developing it also.  Also Perthes leg shorter than the other I went away to think about it, had a brilliant summer without too much pain and wham in October it kicked in again affecting hips, knee and back and am unable to walk as far as I could (and I love walking)  I am going back to see the surgeon next week.  My advice to you would be to see your GP and if you are in the UK as for physiotherapy.  Sorry for lengthy post but please go and have it checked out I believe the uneven gait over the years has caused many of my lower back problems.

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  • Posted

    My son had perthes  from 3-81/2 years old and spent all of that time non weight bearing in a wheel chair. He has suffered a great deal of back pain up til now (he's now nearly 14), he's had loads of tests and the only conclusion they have come to is that the core muscles didn't have a chance to develop as they normally would have done as a young child, therefore not supporting the back as they should. They told me that this is quite common in people that have had Perthes. Unfortunately he has just had an X-ray on his good hip which has shown some changes, which is a bit worrying, so more tests to come to see if he's getting it in that hip.
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    • Posted

      My legs and back would feel sore/tired if I walked any long distance when I was younger but it went away as I got older. The Drs had told us years ago I possibly would have arthritis in my back/hips as I got older. I haven't had any X-rays since age 18 on my hips, but if the pain continues I think I will have to go see what's going on.

      I hope everything turns out ok for your little one!

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    • Posted

      Hi Tina

      I hope you don't mind me replying. I wanted to ask what were your sons symroms when he was first diagnosed. I was told today my 4 year old has perthes but require mri to confirm.. He only had x Ray. He had a limp for two days and that's it. Since then he has been fine apart from the X-ray showing abnormalities. It's hard to know what is ahead. Can't help but be concerned. How is your son now

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    • Posted

      Hi Sarah,

      I'm sorry to hear your son has Perthes, it really should be able to diagnose him just from an X-ray but that depends on how mild or severe it is, it might be that your sons has been caught early so the X-ray isn't as clear. The MRI is a difficult thing for a little one to go through, a big noisy machine, so they may suggest a general anaesthetic for it. Don't be frightened by my story I'm going to tell you because my son was a rare case. My son first started limping and complaining of knee pain when he was 3, he was referred to the hospital but while waiting for the appointment he got worse and struggled to go upstairs or walk far. When we first went to the hospital, the consultant told us what it was before he had the X-ray, then sent us down for the X-ray to confirm his suspicions and a few minutes later it was confirmed. He had a severe form of it and the head of the femur, the rounded ball joint, was eroded into bits and had nearly worn into the growth plate. We were told he had to stop walking immediately and he would be in a wheelchair for a year, not allowed to weightbear at all, it was devastating. After this he deteriorated and started to suffer severe pain and we ended up in hospital lots of times, usually for 2 weeks at a time, with him on traction and confined to bed and me staying with him 24 hours a day. In the end we were shown how to do the traction and allowed to take it home, we turned our dining room into his bedroom and did the traction ourselves. He suffered dreadful pain, was taken to theatre a few times for them to look into the hip with a camera, bone marrow biopsies because they thought he might have cancer because his pain was more than it should be and he was recovering as quickly as they wanted but the results were ok. We had amazing treatment with the consultant we had, he was known as one of the best in the country. In the end my son was in a wheelchair for 5 1/2 years before we saw his hip start regenerating and he slowly started to walk again when he was 9. He's having a few problems now but mostly to do with weak muscles and because he has a spine problem. My story was a nightmare, but mostly it doesn't happen like this, you will find different doctors treat it differently, some want to operate others want to be more conservative. My advice to you would be, don't let them operate unless his hip starts slipping out of position if it starts becoming misshapen, it's really important to keep the head rounded which is why our consultant believed in the conservative approach, and non weightbearing especially in little children. I'd also suggest you join the Perthes Association, they are based in Guildford but their website is great for information and if you need to talk to someone about it, they are very helpful, they also do children's parties a couple of times a year, the Christmas one is brilliant and meeting other parents in the same position as us really helps. I really hope your son has a mild form, and if you have anymore questions don't hesitate to ask. Be strong, you will get through it. What area do you live in? Let me know how you get on after the MRI. Xx

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    • Posted

      Thanks Tina for your response. I appreciate it. You must have had such a difficult time while your son was growing up and especially when he was in a wheelchair. I have to do some reading up on this as I really don't know much. The doctor told us he has it but also needs mri. I could see one hip was rounded And the other had a small chip out of it.

      Im thinking is this something that will develop over time or could it stay the same? I know there is different phases. I guess there is a lot of bad stories on the Internet so im trying to be positive. He's such an active little fella. In your experience if they caught it young, should he not do sports etc..? Sorry for all the questions. I wish you well with your son. Im in Ireland so I'll check out the Guildford group. Thanks again

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    • Posted

      Perthes basically starts because there is an interruption in the blood supply to the hip bone, the bone then becomes soft and starts to break down, this process is probably what is happening to your son at the moment and, if he has been diagnosed early, the appearance on his X-rays will show the progress of the breakdown. He will probably be checked every few months. It's best that he doesn't do sports, running, jumping etc can cause further damage to the softened bone, so I'm afraid you might be in for a tough time trying to slow him down. What the doctors are waiting for is the blood supply to return to the hip and new bone growth to start, at this point it is really important that he doesn't over do it, because it's extremely important that this bone has the chance to grow back with a rounded head to ensure it will stay in place in the socket. It is an awful lot to cope with, and you will read a lot of conflicting info on the Internet, when our son was diagnosed, we were devastated and contacted the Perthes Association because we wanted a 2nd opinion and asked if they could recommend anyone, but when they knew who was treating our son, they told us we had already got the best and if he was saying to stop walking and use a wheelchair, that's what we should do. He amazed us with how quickly he adapted to it, within a week he was pushing himself, scaring the teachers at nursery when he would charge down the ramps towards a wall, but he always stopped. Has the consultant given you any instructions as to what he can & can't do, has there been any mention of him using a wheelchair? 
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    • Posted

      Hi Tina

      The consultant said don't stop him doing anything at the moment so maybe when he has the mri I can talk to him about recommendations then. He had no other symptoms at all and isn't limping or in pain. We will be referred to a children's hospiral for care and he said we will have regular x Rays to look at progress. It is strange that he said for him to keep running etc...

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    • Posted

      It's strange but you can speak to lots of Consultants and they could look at one child and all come up with different treatment plans. All I would advise is if he does let him keep walking, be very cautious over how much jumping and anything that jolts through the hip, he does, especially avoid trampolines and bouncy castles. The most you can do to protect keeping the hip in a rounded shape the better outcome he will have in the future. Will be thinking of you both and hope that his MRI shows a mild form. 
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    • Posted

      Hi Tina

      We had another appointment with our son with a recommended surgeon after not being happy with initial consultation. He confirmed perthes and said he was optimistic. He had the x Ray from oct and one from feb to compare progress and there was not too much change. He has recommended no running jumping etc.. He suspected because it started with a limp in the other leg that he probably is in that hip too. We have mri in two weeks and then back in May.

      I don't know what to be thinking as it's very much wait and see game. He is starting school in September so no running in yard etc.. Hope your son is ok

      Take care.

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    • Posted

      Hi Sarah, I'm glad you've had a second opinion and had better advice, our sons started with a limp and knee pain and X-rays now show he probably had it in both hips. It's very frustrating when all you can do is wait and see, we found it very hard as we'd been told he'd be in a wheelchair for a year but it was never ending and took 5 years, our son was a rare severe case and most children don't take this long. It's going to be hard restricting your sons movements, in some ways it's easier when they are in a wheelchair because they can't push things, he's going to want to do the same as his peers but the mire restricted he is the better end result he will get, and later in life he will get less problems. I wish you lots of luck and hope that he will soon be on the road to recovery. X 
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    • Posted

      Hi Tina, your poor  son. Would that mean staying off the other hip now? It's such a cruel disease. We're trying to be positive as from the outside he looks Finn and still doesn't seem in pain. MRI on April 5th so fingers crossed, thinking of you and your son. Stay strong x
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  • Posted

    My son had Perthes disease for 25 years. Diagnosed at 9 years old.

    ​He has had back problems and severe problems all of his life.  Even after the corrective surgury for the hip, he is still in pain with his back. His hip hurts badly with cold weather, weather pressures, and of course over exertion or twisting. He had an MRI on Wednesday and it has not been expertly read, but on the MRI it said Scoliosis and his spine looked curved.  We were advised to "wait" and have surgury until his bones were fully grown and because he would only be able to have one hip surgury in his lifetime.  The ​"wait" has caused,  from what we can see, the spine to curve, and alot of physological problems and severe pain that will probably last his lifetime.

    ​Now that his hip is readjusted, his whole body is in more pain trying to re-adjust.

    ​  I am now working on finding a cause. No one should have to suffer their entire life if it can be helped.

     My deep, deep sympathy for you and what you are going through.

    I pray your case will have a better ending, have faith.

     

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    • Posted

      So sorry your son has had such a difficult time.. I had LCPD in both hips but since mine was caught so early all I had to do was wear the corrective brace.

      I've noticed if I wear the lift in my shoe it helps, I don't have chronic pain like I've read others having, just every now and then. I think I need to head to a chiropractor I'm sure I'm out of line, the difference in my right leg is at about an inch and half.

      Good luck, I hope everything works out and you guys find some answers.

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    • Posted

      Thank you. my son has suffered a lot of back pain and because of this he had a lot of MRI's which showed something called a Syrinx (cyst) in his spinal cord just below his neck, which may have been there since birth but could have the potential of causing severe problems if it changes, so we have to watch for signs if numbness or pins and needles. They said this wasn't the cause of his back pain. Worryingly over the last couple of weeks he has developed worsening low back pain, which he's been trying to hide for fear of more MRIs, but today he could hardly get in the car so something needs to be looked into why it's happening and whether it's linked to his hip.
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