LCPD

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Hi Everyone hope someone can give me some insght/help.  Im 36 and had PD when i was 7 which was a direct result of both hips dislocated at 2.  I have my Left pined which was removed when i was 9 (i think).  At 11/12 i had the growth carrlidge removed from my right knee to allow for the left left being shorter.  Lived perfectly well up until around 4 years ago when hip got very sore and movement was limited, docs stated dejenerative arthritus and perscriped me pain killers.  Reasonably ok walk up an hour every day with dog, hill walked etc also regular attenders of the gym high impact classes such as body combat spin etc.  All ok up until about 8 months ago and the pain and now ramped up massively to the point its unbearable.  I no longer exercise walking is very painful.  Movement is very limited extremely difficult to put sock on and painting my left toe nails is now a thing of the past.  I was referred from the pain clinic to s consultant whom which said he wouldnt do a hip Replacement basically i asked for it.  He has made me get raises in my shoes and im waiting which could take 6-8 months for a steroid injectioin.  That is from now, i have already been waiting from last October.  The pain in my left leg to me is hard to describe, my hip would give way if standing, there is now a 22mm difference between left and right leg.  Right leg now considerably bigger than left. Its dull ache then would shoot up and down from bum to calf, is this normal.  Sleeping is awkward basically one side of the bed had gone completely bally as i move around so much at night to get comfy.  I was also waiting on a phsyi with the nhs i waited that long i decided to go myself £36 for 30 mins every week i cant keep up to that.  She worked with the verdibrays on my back to loosen them as i feel by back and left leg is very very tight.  Getting in a car is a nightmare, walking up stairs is hard as i can only use my right leg.  It helps for around  a week but then basically go backs to normal if not even worse.  Any one any pointers how can i talk my doc into giving me the HR? I do take pain killers however taking 8 tablets a day isnt how i want my life to pan out  and whats concerns me more the last of movement.  Im concerned movement will get worse as time goes on.  Im gettng married in May and our plan is to have children worried as this lack of movement will severly affect this. 

THanks

 

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5 Replies

  • Posted

    Hi, Lyndsay,

    A couple of things.

    Firstly, the pain you describe, especially the shooting pain sounds very familiar to me. 

    I suffered from Perthes at the age of 10 and had a various osteotomy (bone cut and pinned back). I led a fairly active life until a couple of years ago, when the pain got too bad.  I got a referral from the GP and the consultant I saw was happy to suggest surgery.

    It is curious that your first consultant has not supported your desire to get rid of the debilitating pain and offer a hip replacement.

    I would simply start back at your GP and ask for a referral to another specialist.  The more experience a surgeon has, the better.  BUT, don't go with someone who may be quite old, near the end of the career, unless they can re-assure you that they have been in continuous professional development and are, therefore, totally up to date with the materials used and the techniques and surgical approaches.

    I am also very surprised by the suggestion of a steroid injection.  Sure, it should alleviate the pain for a while, but that is by no means a solution.

    Good luck

    Seamus

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    • Posted

       

      Hi Seamus, thanks for replying.  I am concerned as to why they are not keen to offer surgery however i believe it is really all down to Money which the nhs doesnt seem to have at the minute.  I think the injection etc is just delaying tactic.  I had called the consultant secretary last week to arrange another appointment but she is on holidays returning on the 4th so i will call again then and arrange another appointment failing that ill go back to my GP

      Thanks

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  • Posted

    Hi Lyndsay, I'm sorry you're having such a rough time, pain can really drag you down. I'm replying from two angles, 1 being the parent of a child who had severe Perthes disease and spent 5 years non weightbearing in a wheelchair, and 2 as a person who lives with Chronic pain from my back/hips. 

    With regards to your pain, are you taking any anti-inflammatories as well as your pain killers? If not these could really help calm the pain down a bit, also have you tried a TENS machine, I use one for my chronic back pain and it really helps, there are other medications your GP could try as well that work on nerve pain. The pain shooting down your leg is more likely to be coming from a nerve being pressed in your spine, which wouldn't be surprising with your difference in leg length. Have you had a MRI on your hips and lower back, if not I would really push to get this done as this will really show in detail the state of your hip and possibly give more persuasion towards getting a Hip replacement. If your consultant won't do an MRI, and you can afford it, ask your GP about getting a private scan.The consultant that treated my son was one of the best in the country and helped us through some very difficult times, as my sons Perthes was a difficult case even for the consultant, and we spent many weeks in hospital on traction. But I remember him telling us that a lot of recovered Perthes patients need Hip replacements in their 20's, so to get to your age without one is really good but understandable that you need help now.

    If you get nowhere after pushing some more, speak to your GP and state that you want a 2nd Opinion, they may say they can't help if this is the case, then contact PALs at your local hospital and tell them you aren't happy with the treatment you have received from your present consultant and you require a 2nd opinion. 

    Our son was 3 when he was diagnosed with PD, and didn't walk again until he was nearly 9, it took another 2 years to complete his recovery but he still has problems now he's 15, including a lot of back pain, and hip pain if he over does it.

    I really hope that someone will listen to you and give you some help. I know how frustrating it is when no one listens. X

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    • Posted

      Hi Tina

      Im sorry to hear your poor wee son is in so much pain, i hope he starts to fully recover soon.  When I hear of your son its puts my pain into persepective.  Thank you for the tips regarding the MRI scan, i will be making notes for the next time i visit the doctor which i hope will be sooner rather than later. 

      Great tip on the tens machine aswell.  I was at physio last night which helps for a week or so if only I could last longer.

      Hope you feel better soon also, I will keep you updated on any improvements x

       

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  • Posted

    Hi Lyndasy,

    Sorry to hear about the pain. My son is 26 and has had LCPD since 9. He also had the scrambling of the growth plate in the good leg to help with the leg legnth difference. In high school he went to Dr. Byrd in Nashville, TN. They went in orthascopy and reshaped and cleaned up the hip. It worked great for about 3 years. Had it done one more time and it gave him about another year. Now after going to several specialist etc. He has decided to have a total hip replacement as he is in the middle of med school. The doctor that is seeing him now said if he wasn't doing something that needed him to be active and on his feet he would tell him to tough it out. But knowing everything that is coming up, he said the total hip is the best. They will be doing it from the Anterioral approach. If having a dr. to do this, make sure you find one that specializes in it. This doctor is out of Atlanta, and does a couple hundred a year.  Dr. says that he will have it as outpatient and walk out of the hospital. He has it on April 13th.

    With all said. If you are finally tired of the pain. You don't have to settle for pain management.  Hope this helps.

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