Bi-lateral perthes My story

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My name is Gary and at the age of 7 I was diagnosed with bi-lateral perthes after falling off a wall. Before the wall incident I did not display any symptoms like pain in my hips or limping.

After the perthes was diagnosed I was placed in traction for approximately 6 weeks then under went the first of 2 operations. The operations were ostiotomies which entailed the cutting of the femur bone and changing the position of the ball joints in relation to the sockets and securing the femur bone with Sherman plates. The second leg was also repositioned 3-4 months later.

I was in a plaster cast covering both legs with a bar in between them for approximately 1 year and then received intense phyiso to enable me to walk again. The operations also affected my schooling finding I missed approximately 2 years of school and by the age of 10 I was freed form all appointments concerning my hips and was told not to do sports like football/ rugby.

I spent my teenage life like every other teenager I did feel pain in my hips but it was tolerable so I shut it out of my mind, I did play football/rugby and other sports like boxing for 5 years and left school straight into a job as a petroleum engineer until the age of 25 when I collapsed at work.

I was fortunate to see the orthopaedic surgeon who performed both operations and he said I would no longer be able to perform the job I did as my left hip had collapsed as well as my pelvis had tilted and the right ball joint and socket were also remarkably deformed.

When I asked him what could be done he said I was too young for a hip operation and I would need physiotherapy to keep me mobile. The physio only exacerbated my condition as there was problems with my pelvis and the base of my spine, every time physio was done on my hip and lower back all my back muscles would go into spasm causing me to collapse, so heat pads had to be put on to my back to ease the stress. This went on for 6 months so I was advised by the physiotherapist to stop physio. I was put on strong pain relievers and given a wheelchair.

12 years later I had had enough of the pain so I investigated the possibility of hip replacement. I asked several orthopaedic consultants through the years about this and also the implications to the damage to my spine. I did explain my concerns as the x-ray showed the plates misshapen and not in the usual shape of the base of a spine, being told I was not medically qualified to deserve an explanation to my query just frustrated me, At this point I decided that this surgeon would not be allowed to operate on me as my confidence in him had all but disappeared. :roll:

I did have total hip replacement with the so called Rolls Royce of fusion hips in a private hospital. I was on my feet again for the first time in years with only a stick, 1 month later I had a DVT (deep vain thrombosis) in my left shin muscle which caused a PE (blood clot) in my right lunge and also pneumonia which I spent 8 days in hospital on oxygen, countless drips and was given a transfusion of 2 pints of blood. After this episode it became apparent that I was experiencing sever pain in my groin area and the base of my back as well as my operated hip, this continued and I then started to feel pain in my left knee which was found to have torn ligaments.

Before I hade the hip operation I was also diagnosed with plantar posits in my left foot which made moving around very difficult and my left knee would swell up like a balloon, I put it down to the damage caused by the collapsed hip in relation to my spine.

I keep on about my spine as I feel when I collapsed at 25 years old the operation should have been considered then as the damage to other areas would not have gotten worse and by leaving me like this for 12 years has made my condition irreversible.

When I had the total hip operation it took 3.45 hours as they also had to remove the Sherman plate from my femur bone which was placed there at the age of 7.

Last October I spoke to yet another orthopaedic consultant who explained to me that my leg had been in a different position since the operations I had at 7 years old and I would now be stuck like this as the physio and hydrotherapy I had 6 months ago also did not work and preceded to talk about operating on my right leg which has also collapsed. I did not tell him what I thought about that as what benefits would come from another operation while the other operation was not successful and he would see me in 1 year’s time.

Since having a total hip replacement I have also been diagnosed with auto-immune arthritis which affects most of the joint in my body and also have incontinence problems, I am 41 years old and not so much angry as annoyed that the doctors involved did not inform me of what might and could happen.

So as it stands medication I am on are

Morphine patches (pain relief)

Methotrixate (for auto-immune arthritis causing blurred vision, breathlessness), Amotriptiline (nightly for muscle relaxer, can cause intense dreams)

Anti-inflammatory tablets (control inflammation)

Ant acids (to counter balance burning in stomach from anti-inflammatory tablet)

If there is any body with bi-lateral perthes and is about to get hip operations do consider what will the outcome be on your spine/back and the after effects of the operation.

I am willing to answer some of the questions concerning my condition as this only details the basic facts of my condition.

Sorry this is so long but it does cover 34 years.

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  • Posted

    Hi Gary,

    My name is Hazel and I am 32 years of age. At 3.1/2 I was diagnosed with Perthes in both hips and taken off my feet until I had an operation. Apparently it was so far advanced c ouple more weeks/months I would now be in a wheelchair.

    I had the Femeral head turned around and was ok until 2004 and had a shelf asteoplasty.

    What I would like to know is that I am showing signs of increasing back pains in the lower region and accross the shoulder blades. Does this sound familar to you?

    I have good days and I have bad- when its bad I struggle to get dressed / undressed and do anything for myself!

    Can you advise me please?

    reading this site has kind of frightened me as to what could come.

    Many thanks

    Hazel

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  • Posted

    Hi Hazel

    [b:ad58216b7a]Do remember everyone is unique and what happens to some people differ from others. [/b:ad58216b7a]Yes I also experience the pains across the shoulder blades which I assume is related to the angle of my spine at the base of my back. sad

    The only thing I can do when this happens is stay in a laying position until it eases, this can take a day up to a week.

    [b:ad58216b7a]My advice is to check with your Consultant and explain your concerns[/b:ad58216b7a], the Consultant will probably suggest seeing a physiotherapist as there is a chance they will be able to help you, in my case the physio was unsuccessful and that’s not to say it will not be successful for you.

    [b:ad58216b7a]If you are not satisfied with the outcome of your consultation [/b:ad58216b7a]like me I would/did get copies of your medical records and any x-rays (you will have to pay for these) from both consultant / GP and seek a second opinion. I keep a full up to date medical history of myself as in the past documents and x-rays have been lost. Being informed will help you cope with your medical problems as knowing what’s up enables you to take steps to help yourself.

    [b:ad58216b7a]I do understand it can be very scary listening to other people’s stories[/b:ad58216b7a], remember this does not mean it can happen to you, the main reason I decided to tell my story was I wanted to help others by informing them of my experiences in dealing with some Consultants who frankly are so arrogant that they have forgot how to communicate with patients and in this 21st century patient empowerment is encouraged. smile

    [b:ad58216b7a]Take steps to help yourself [/b:ad58216b7a]such as contacting your local Social Services.

    I found them to be very helpful, for example a bed lift to help me get in to the sitting position in the mornings, aids to help with bathing, ramp access to home as I am stuck in wheelchair so needed these aids to help me remain independent.

    The Social Services have [b:ad58216b7a]Occupational Therapists (OT)[/b:ad58216b7a] that asses your condition and suggest ways to make your life easer and more comfortable.

    By explaining what difficulties you have, its affects on your wellbeing with certain aspects of you life could be very beneficial to yourself on your bad times. :idea:

    Hope this helps

    Best regards

    Gary

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  • Posted

    Hi Gary You wrote to me about 2 kids under 5 with perthes. Well my little girl has had an x-ray of her hips. We will know for sure if she has perthes in about 3 weeks time as she went to a clinic which sends x-rays to our local hospital to be checked. What I would like to ask you is about my son. He has perthes in his left hip which is very bad. He also has a lot of scaring on hig pelvis. My son can hardly walk as he is always falling. His conslant is just seeing him every 3 months with the wait to see aproch. His next appotment is on Monday 4th Feb. I think it is also now in his right hip which I hope that I am wrong. We live in Northern Ireland do you think that I shoud bring my son to the main land for a second appion as their is only 3 consalnts here that deel with perthes. I was told by one consaltant that he will surgary soon, and his consaltant says that his bone will end up growing bigger and he will need surgary when he is older. After reading your page I just want what is best for my child. Please write back many thanks Kelly-Ann.
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  • Posted

    Hi Kerry Ann,

    I can understand your concern about the wait and see approach. sad However with your son being under 5 and the advancement of treatments I could not say what would be the best for him as yes his little bones will grow bigger. I would suggest talking to your Consultant and explain all your concerns, make a list on a piece of paper as this will help you when put points across, I always do this so not forget or get side tracked.

    For example,

    Find out if he has bi-lateral Perthes

    Find out what are the implications if your son has to wait a long time for surgery (will it effect the base of his back, knees so on, due to stress when walking)

    What type of hip will be put in (cemented / fusion?)

    How long before replacement of fist hip replacement

    I am sure you will have several more questions to ask

    If you are not satisfied with the Consultants information, talk to your GP and explain the reasons why you are not satisfied, from this you should be able to get second opinion. Saying that, “Perthes” is quite common in Ireland so they might have lots of experience in treating Perthes.

    Remember Perthes has been around for a long time and the treatments have got a lot better, smile I was a so called guinepig some 34 years ago and because of the ostiotomies I was able to live a normal life until I reached 25. The Sherman plates on my femur bones were left there which I found strange considering I was 7 years old when the operations were performed. This put nearly 2 more hours on my operation and I do feel that treatments around Perthes is still experimental, what’s good for one person might not be good for anther person. :roll:

    I had a total hip & socket replacement (Fusion hip & screwed socket) which took nearly 4 hours because of the Sherman plate. I chose to have an epidural and was awake throughout most of the operation which helped me to deal with the situation. My Orthopaedic Surgeon came from South Africa, in a private hospital and was on my feet and out in 5 days. :D

    If you have any more questions please do contact me as I will try to help as much as I can.

    Good Luck

    Gary

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  • Posted

    hi gary i started 2 cry wen i read about your experiance as it was more or less like mine i 2 had where i was in plaster with them braking my hips 2 see how they would repair.i was in plaster 4 24 weeks, also hada curve spine with limpin all my life also had throbosis in which it killed one of my kidneys which i had 2 have removed. i am now on my 3 hip replacment i walk with elbow crutches have done since i was 14, with help of a wheel chair if needeed. im 41 years old and i need a nother replacement off which i been told might not work. i have been up and down all my life i try not 2 moan wen i in pain but its hard i take lots of pain relife and injections, i try a long time a go 2 see if i could sue the surgaen and other dr but was told about 20 years ago i could try and sue but i need at least 15000 in the bank and my dr and hospital note ended up gettig kost so they dont now start till 1977 10 years worth gone, i give up a long time ago. tryin 2 fight, i now just get through each day the best i can thank you 4 istening

    :cry: :lol:

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  • Posted

    Hi Gill67

    You are not alone with thoughts of taking action against the Doctors, I had litigation thrown at me years ago by a have ago attitude Orthopaedic Surgeon from South Wales even though I did not suggest or indicate any intention of doing so. I have a case as the Sherman plates that are place on my femur bones were left and should have been removed as I feel they contributed to my uneven leg lengths (restricted). I have not perused this because at the time of my operations I was only 7 and all decision was down to my parents.

    I am a full time wheelchair user as it is too difficult for me to get around on crutches and have secondary conditions to Perthes. The main reason why I placed my story up was because I needed to know if Perthes affects the spine in other Perthes sufferers. I now know I am not alone and have grave concerns for patients of our age, I also believe it is time that patients began to take control of medical records as then lost copies can be found very quickly.

    I am really sad :cry: to here that you will need yet again another hip replacement and it might not be successful, as for me I have only had one replacement on my left leg, they want to do the right leg and I will not let them touch me again. I have constantly complained about the new hip, my groin feels like it is being crushed, the burning pain in my pelvis is on times unbearable and as for my spine the damage as described by one Consultant is in-operable. I do believe that the Orthopaedic Surgeons should explain very clearly the complications of secondary hip replacements; I sent a private mail yesterday to another explaining why patients should know the replacment hip types (Cemented, Fusion) how they a positioned and what are the chances of secondary replacements when needed.

    Now with my new Rheumatoid Consultant who recons he understand orthopaedics has yet again suggested physiotherapy even though six months ago an Orthopaedic Consultant stopped it due to the stress and pain it was causing, when I explained this he suggested I had given up. Before I moved to Cornwall in November I lived in Redbridge in Essex which I was actively involved in the voluntary service network, run a support group, one of the founder members of a national network, committee secretary for a personal development centre and been doing part time BSC Honours Degree, I would say that I have far from given up finding I probably do more than the average person.

    I find Morphine patches smile (one patch changeable every 3 -4 days) help with the pain as well as anti-inflammatory, saying that I still experience pain some days worse than others.

    I do believe that the Orthopaedic Surgeons should explain very clearly the complications of secondary hip replacements; I sent a private mail yesterday to another explaining why patients should know the replacment hip types (Cemented, Fusion) how they a positioned and what are the chances of secondary replacements when needed.

    What I want and now expect from the Consultants concerning my Perthes conditions is an accurate reports so that other services like Social Services who supply beneficial aids to help me so on…

    If you want to keep in touch and talk about Perthes please do, I do check mails nearly every days will reply as quick as I can.

    Best Wishes

    Gary

    smile

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