RE total hip replacement following Perthes disease

Bones, joints and muscles
1

Hi Shaun

I am ten years post a Perthes-related total hip replacement! It really has been a godsend for me :D

Briefly- I had Perthes diagnosed aged 8, but they caught it late so hip ball was pretty badly mishapen- cue osteotomy, hip spiker etc- followed by 2 more osteotomies before the age of 13. By 15 I'd developed secondary osteoarthritis and the joint deteriorated rapidly (v v painful) and pretty much as soon as I stopped growing my consultant opted for a full hip replacement (I was 19). I had a custom made joint designed after a number of scans, partly due to thickening of the femur from my previous ops, and it is a ceramic plastic composite (ceramic ball onto plastic cup I think).

The initial 3 months post op were fairly hard going, you are not able to move beyond 90degrees abduction so can only sit of high seats- and need a special raised loo seat! I was in a student house at the time so it was a bit embarrassing but I was kitted out by the Red Cross who lent me all the stuff needed for those 3 months- my housemates got so used to the special loo they said they missed it once it was gone! :oops: But after lots of physio I can honestly say that it made the world of difference...within days of the op my pain levels were far below what they'd been, I was off crutches within 6 weeks, and cycling a bike again at 3 months (after not being able to cycle since 13!!)- and 6 months later I spent 3 months SCUBA diving in Malaysia!! :D

At first I had yearly check-ups (x-rays), then every 2 years, until 2 years ago when I was discharged (at least temporarily) from my consultants care! The hip is still not showing any sign of wear- and I am active- walk a lot, have had 2 children with the new hip etc.- so although the initial prospect had been of it lasting only 10-15 years we're now hoping for 20. Anyway crossing each bridge as we come to it. The pain in my hip is 99% gone, but I do suffer a touch with my back and my \"good\" leg's knee- but both have had to bear the brunt of a lot as I grew up so it's inevitable really... And I see a good (private admittedly) physio fairly regularly to keep on to of things, and try to swim whenever possible...(but not breast-stroke- that's a big no-no for those with hip replacements!). I do still have a leg length discrepancy (2cm) which is partly what causes my back/knee issues.

Good luck with getting yours done, I'm sure you won't believe the difference :D

~ Annika

2

Hi Annika

I was diagnosed age 5 and had 3 operations. I learnt to live with the pain thereafter but age 21 it all came back. Now I'm 29 and in the last 5 months the pain got so bad that I can hardly walk.

I'm booked in for a hip replacement in 2 months time, not sure yet if I'm happy or frightened. Good to know there are others out there with the same disease. I was always treated like an "alien" as no one knows what perthes is. Interesting enough, half the doctors I've seen has never heard of it.

Glad you are doing good now :-)

3

Hi

Is great to hear some of your experiences as i wasnt too sure whether i wanted to revisit this aspect of my life.

I had perthes disease when i was 8, my doctor didnt believe there was anything wrong with me and for 6 months kept telling my mum it was psycological. It finally became clear that there was something wrong when it took me two hours to walk a mile from school and use a bike with just one foot on the pedals. She was finally able to convince the doctor for a referral and i was sent to yorkhill - its funny what you remember but i remember this was the day that my class were going to see the lion the witch and the wardrobe. Anyways i went for the referral and was admitted to Yorkhill immediately - i didnt go home but instead went straight to a ward, had my legs shaved (at eight i know - weird) and was put in traction for months. This was obvioulsy a complete shocker, staff at Yorkshill were great but i hated hospital - came out of it at 3 stone at eight and one foot a size 12 and the other a size 8.

Seemingly i was almost in a wheelchair for life due to the severity of it - anyways - spent the next two years on crutches and 6 months in a wheelchair and with some sort of sam brown belt that went over my shoulder, around my waist an held my leg up. Returned to school in a taxi each morning and constant ridicule, some teacher even had the great idea to take me on a school trip to the park in a kids stroller pram - marvellous - just what i needed smile Doctor told me that it would have a big effect on my adult height and ended up the shortest in my family by a mile - bummer lol

anyways scroll on a number of years and i ended up playing semi pro football and even ran the 2003 London marathon. i could always tell when the weather was getting poorer, drizzly days and freezing fog were the worst. My wife used to laugh when i would tell her that the next day was going to be bad cause my hip was playing up

I am now 38, have one leg a bit shorter than the other - pain in the neck when getting suits to fit/tailoring and my foot is starting to turn inwards again. i suffer from almost unbearable back pain constantly which is getting worse. My wife is determined for me to speak again with the doctor but the last time i was there and raised it with a locum she told me it was fine and would be ok - flashback to being 8 again

i was in work today and my boss now wants to refer me to occupational heath - spose most of my issues are psychological - hated being probed and prodded, told nothing was wrong, being called a liar etc etc but know that i cant put it off too much longer.

I usually get through the evenings with co-codamol but am aware of how addicitive they are

dont want to dishearten anyone as my teenage years and upto my mid 30's were great and i was able to play football and run the marathon and make up for the years i lost - just at a bit of a crossroads here, know what i need to do but am reluctant to take the step if you know what i mean smile

4

Hi,

I have used practically my hole life a 2 cm insole and I guess that helped. I'm 32 and so far no back problems.

I also sleep with a vein pillow and that helps with my leg pain.

My doctor advised me to take it easy so that I can postpone the hip replacement surgery till I'm 40 but it's getting harder. I can't walk long ways without getting pain.

He also says I have to loose weight... I do notice an improvement when I'm in a better shape but every woman fights with her weight, it's always easier said then done.

How was it for you to give birth? Did you have hip pain? I can't open my legs very wide. Was that a problem for you?

What about while you were pregnant? Didn't the extra weight cause you more pain?

Great that I found this forum. I never met any adult who also had Perthes as a kid.

Good luck for you all smile And the hard times end up making us better persons wink

5

Hi,

My name is Jim. I'm 50 years old. I had operations for perthes at age 8

and again at 17. The next year we had to try again because of a bone graft

that didn't take. I read your story and am stronger for it. 2 years ago the

pain really took hold. For 37 years I've managed to tolerate the pain and

work(on my feet) in the grocery industry. Now I'm finding inspiration in

your story. I was hoping that steroid treatment would give me some more

mileage. However, the doctors had doubts and now, one month after the

first arthrogram, the improvement is minimal. My leg is now over one

inch shorter. The doctor says he needs to use spare parts to rebuild the

socket. Funny, huh? Thank you so! God is Great!

6

Hi there,

I was diagnosed at 6 and did traction, A-frame, crutches and traction, A-frame and crutches again as it didn't work.

I am glad that I didn't have to have a surgery like some kids, but it was though none the less.

I did go on to be able to run cross country, all kinds of sports etc. It was still painful though as I also have scoliosis.

After I grew the pain lessened a bit but was still there. Although the hip was fine.

I was pregnant with my first child and they told me it would be hard, it was but bearable just.

I had to have a c-section as my hips were not going to be able to move as much as they needed to for a natural birth.

All went well and strangely after I recovered my back pain was minimal compared to before.

Now I have had my second child and am now 41. Now I am finding my hip much sorer than before.

I guess it will be time soon for a hip replacement, but we were trying to wait as long as possible.

The limp is back and I am getting ready to see the specialist.

I will continue to see this tread as I am interested in the success of the replacement for some one of my age.

Good luck to us all.

Regards

Simone

7

Hi All

Glad to see other people have had similar experiences to me, makes me feel less alone with a dodgy hip.  I had dislocated hip when I was too, like others it took Doctors along time to admit something wrong. I then was diagnosed with Perthes when I was around 9.  Legs in traction and V Cast for several month.  Then a plate and screw was fitted to secure hip.  I lived relatively pain free up until early last year when I noticed limp and the pain increased 10 fold.  Been to one consultant a year ago who thought all I needed was a heal raise in my shoe and a steroid injection.  One year down have the heal raise but still waiting on the injection. No movement at all in left hip basically my whole pelvis feels like its twisted I go every 2 weeks to a physio who is very good at straightening me out but unfortunately cant left the 23mm diff in my left leg .  In April went to another consultant who agreed to do the hip replacement however it will possible be around 20 months granted im down about 3 months.  So looking at early 2019 if waiting time doesn't get longer.  Pain on most days is unbearable due to the inflammation I no longer have ay cartridge left so it is literally bone on bone and whats worse Is I can hear it rubbing when I walk.  I can only now manage walking for around 10 mins or so due to pain but I push on as I have a Lab that needs walked.  Some days good, mostly during the week is worse and I am desk bound barely able to walk without holding on to desks to move  The more I stand the better the movement gets.  I recently got married and would love to try for a baby but as you can imagine baby making process is not easy due to my hip.  Im 37 don't want to leave much longer to try but part of me is thinking should I wait until hip replaced. Pain relief either 4 naproxen a day or 8 paracetamol a day with some co - cocodamol.  Anyone know if heat packs work even just for the stiffness? How  was the recovery? Im planning on 3 months off work? Did anyone have the injection for how long did the pain relief work?

Thanks in advance

8

Anika, thanks for sharing your story. I am 31 years old and was diagnosed with perthes at age 10. I have live with the pain on and off all my life until I had my second child a year ago. The pain is now worse and I can't live without anti-inflammatory pills on daily bases. I am waiting to see an arthopedic surgeon in a couple of months and would be willing to go through hip replacement. My husband is afraid if it gets worse after the surgery. I wonder what would go wrong if the hip replacement surgery fails?! Would i  not be able to walk anymore? Just some crazy worse case scenario thoughts that keep haunting me. 

9

Hi Sarah - did you have your total hip replacement, I was wondering if you have had the operation, how are things now progressing. If not when are you due to have the procedure?

I had Perthes disease in left hip aged 10 years 53 years ago. I spent 6 months in Whitley Hospital, Coventry and then a further 4 years in calipers.

i was able to play all sports for about ten years but after the age of 35 developed osteoporosis arthritis in my left hip.

The arthritis gradually got worse with age and the movement in my hip is very poor and now at the age of 63 I am on the waiting list for a full hip replacement.

I am obviously anxious like yourself as I have never had an operation before but have been assured by the Perthes Association it is a life changer. I have suffered quite a lot in my lifetime, firstly back in 1964 I was unable to take my 11plus because I was hospitalised and therefore had a zero mark - I was placed in with all the students that failed this exam, although I worked my way up to that of the grammar students at age 15 when leaving - pity the system then was as it was didn’t take account of students like myself who was unable to take the exam!

i have been in manual employment for 48 years and just retired and now wait for the op with trepidation. I have found the going very tough and painful during the past ten years and as they say “hobbled over the line”

keep us posted Sarah and good luck!

10

hi Debbie,

how owe was your hip replacement? I am due to have a total hip replacement shortly and obviously quite nervous that it will be a success,

11

Hi you all,

I find this forum always very informative. You are the only people I've known to have had Perthes like me so it's great to be able to share experiences and not be totally in the dark regarding the future.

I'm a girl and I was diagnosed with perthes when I was 9. I was in the hospital for 6 months doing traction until they realized I was too old for it to work. Then my parents had to buy an excessively expensive device to force me to walk with open legs that made me pretty unpopular at school for almost a year. Then we saw another doctor who said that the device only works on babys and therefore he operated me by the age of 10 or 11 (can't remember anymore) in order to put some screws to help the femur's head grow.

When I was 14 or 15 he said I wouldn't grow anymore (been 160cm ever since lol) and I had surgery again to remove the screws. 

Then at the age of 17 a bone started growing in the wrong place, giving me pain when I walked, so I had to have surgery to cut it off.

Since then, until the age of 30 (give or take), I was perfectly fine. Yeah when I walked too much I would limp or have a bit of pain (more so at the end) and I also didn't have as much flexibility as normal people do (opening my leg, hugging the leg, yoga position, things like that)... but for the most part I had a totally normal life.

Then from 30 on, things started getting worse really fast. I started being able to walk less and less until I started limping, having pain and not being able to walk anymore.

I got married 1,5 years ago and had to take strong medicines (opioids - tilidin) in order to be able to go through it (Tilidin is awsome by the way, you almost forget you have a leg problem).

Right before my hip replacement surgery I could barely walk anymore so it was the perfect timing for it.

So I had my hip replaced a year ago. During the surgery they broke the bone so I had to have a second surgery the same day in order to fix everything (yes I have been very lucky with doctors so far :P).

After the surgery I had a lot of pain and was under strong medication for some days. The problem with strong medication is that you aren't very sharp and able to get up well without feeling dizzy. And the doctors didn't want to release me until I was able to walk with crutches and go up at least one step (so they would feel confident I was able to go to the toilet at home and minimal stuff like that). So I had to fight them to reduce my meds so that I could leave the stupid hospital. I was there for 10 very long days (I hate hospitals).

At home I had to stay mostly in bed for 6 weeks in order for the bone to heal and during that time I did physiotherapy in bed once or twice a week (don't remember anymore). After that I could hardly walk and for a long time I even needed help getting out of bed in order to go to the toilet.

About 3 months after the surgery I went for 5 weeks, 5 days a week, 6 hours a day, to a rehabilitation place where I did physiotherapy in the water, walking theraphy, weight/strenght machines among other stuff.

After that I started going only 2h a day, 5 days a week for 2 months (guided half the time) and since last summer I'm doing things mostly by myself 2h a day, 4 days a week (guided 1h30 a week). I'm also still seeing a physiotherapist once a week. So at this point I do still get some guidance but I mostly do excercises in the water and weight machines by myself.

Looking back I can honestly see that I'm so much better now.. so I try and focus on that and be optimistic. I mean, there was a time it was always complicated for my husband to leave the house for too long because I might need to go to the toilet lol. I'm so much better now, I'm even praticing now walking without crutches.

But still there are setbacks and sometimes things get much worse and sometimes it's hard to know if I'm on the right track and stay optimistic.

Then it also depends on the doctors you talk to. Some are terribly optimistic, others cautious, others don't see a bright future. 

And it's also hard because you don't really have much people to compare to because people I know who've had hip replacement had just mild arthritis, not the complicated background of surgeries and bone deformity a person with perthes has. So I always feel like other people either pitty me or think there's something wrong or maybe that I'm not doing enough or doing something wrong, I mean, I know that people mean well but they don't understand that it's normal to need a bigger recovery time and have it a bit harder than a normal person who just had a hip replacement simply because of arthritis. 

Yeah today is not a good day... sorry if I sound a bit gloomy. I was doing really good for a week now, working on walking without crutches and without a limp and I was being pretty successful, even started dancing a few minutes a day smile

Everything was going so well.. Then this weekend I decided to go to the zoo, I though it would be a good walking practice. It was a total of 6 hours, I walked with small breaks every few minutes and 3 bigger sitting breaks. My husband points out it was a great achievement but I've gotten so much worse since then. Now I have pain, I can't walk almost anything.

Yesterday I spent the whole day in bed and today I was feeling a bit better so I decided to do my Qi-gong class and sitting for 30 minutes was the last straw for my leg (sitting is still very hard for me). Now I know I'll have to spend the day lying down and it's sooooooo frustrating. And I don't even know if I'm on the right track. The more optimistic doctor says this is the way to go. Keep on doing things even if I have pain and give always my maximum and leave my confort zone... and it was working last week but now it seems it's making me worse instead of better. I just wish I had someone I could tottaly trust that what they say is the truth and I would follow but it's hard to know who to listen to when I hear so many different opinions.

That's one of the reasons I'm happy I found this forum.

Sorry for the huge feelings rampage...

I wish all of you the best of health and, most of all, a happy mind wink

12

Amazing stories and so pleased we are now able to share with others. 

I am now 63 and my LPCD experience began after playing on a successful baseball team when I was 7.

Apparently, I began limping everywhere but had no pain. The elementary school gym teacher actually called me in to measure my legs and one was shorter than the other. My parents took me in for XRays and my Ortho diagnosed LPCD in both hips.

I had to wear this leather harness contraption which wrapped around your waste and shoulder (like safety patrol) and had a leather strap extend downward to buckle to the heel of my shoe. This kept my right leg up at a 90 degree angle while I wore crutches. Didn't help the left hip at all!

Anyway, I wore this absurd device for 8 months but cheated regularly in the school yard by disconnecting it and running around with my friends. Actually played football with the crutch shoulder pad! Absolutely hated it and was always embarassed! My brilliant school principal actually had me commuting to and from school on a short, mentally handicap bus! My friends really gave it to me then!

After 8 months, the ortho gave me the go ahead to drop the crutches and the harness but advised my femur ball was badly misshapen into an anvil-like shape and would have problems with it for the rest of my life and particularly as I got older.

I played every sport imaginable (baseball, basketball, some football, tennis, soccer, skiing, mountain hiking, etc) which probably prevented me from excelling but was grateful to just be very good or average at many athletics.

I always had to deal with post game pain and inflammation which just got worse each year.

Had limited range of motion and lived on Advil, stretching and prayer! 

The pain and stiffness started impacting my lower back and knees over the past 10 years so finally gave in to an anterior hip replacement 3 years ago at age 60.

Had no post surgical pain at all and my rehab was very quick.

I am now 63, still very active with soccer and basketball officiating, coaching, skiing, swimming, hiking, etc.

Ran my first post surgery 5 mile road race, bought Hoka 1-1 running shoes and settled for 11 minute miles but still consider it a success! 

No problems with my repaired hip, have occasional pain with my left hip and have pain and arthritis in both knees from constant pounding of soccer fields and basketball courts.

Just trying to make it through for another few years until too old to care!

I feel I am totally blessed after reading so many stories of LPCD victims who would be grateful to just walk!

If there is anything I can help you with or advise you on then please let me know.

Would also like to know if there are active LPCD research foundations I can donate to or volunteer.

Wishing you all speedy recoveries and God's strength!

Lou Carpenter 

13

Lou

Glad to hear your story and to hear that you are doing well.  I had Perthes age 5 and wore a brace for a year and a half.  No real problems after that - I have a 3/4 inch limb length discrepancy.  Developed some pain at age 30 but lost 30 lbs and ran a marathon a year later.  Was able to do step aerobics until about three years ago.

Now however, arthritis is setting in.  Steroid injection worked for almost 3 years - the second lasted only weeks.  Just had my third injection of Supartz (rooster cartilage) - no help yet.

I am 66 and a surgeon so I am on my feet a lot.  Probably need surgery later this year.

Any pre-op advice would be appreciated.

Rick Orr 

Rick Orr

14

As posted earlier, I finally met with my surgeon and decided to go ahead with hip replacement. I kept hearing from every nurse and medical practitioner at the hospital that i was "too young" for it, but i have come up with an understanding that my condition is unique and i should feel special. i am now 2 weeks post surgery of total hip replacement, i walk with a cane until my muscles are stronger again. Hip replacement is not the end of the world as it was described to me and it is no longer for old people. i feel my new hip is stronger than my arthritis bones full of pain. The surgeon fixed my leg length as one had got shorter. I no longer have pain. at 32 i feel i am given another chance to start my life over and enjoy before i am too old. If you are in doubt... please stop listening to the old myth about hip replacement, just do it. it is life changing,