Orthopaedic surgery for leg length discrepancy

[Dustyblue]

Just wondering if anyone has experience with this?

My DS8 has a genetic condition that (amongst other things) causes accelerated growth. His left leg is approx 4cm or 2 inches longer than the right leg. His left foot is pronated. Currently he uses a shoe-raise.

We are lucky to have a team at the Royal Children's Hospital in Melbourne, Australia.

The Ortho surgeons have offered this:

1. We can stunt the growth in the longer leg
2. We can attempt to grow the shorter leg, by means of implanting rods with screws in them. He will wear a metal 'halo' around his leg for months, whereby we turn the screws at intervals to force new bone growth.

To me, it would seem a no-brainer to choose option 1.

There's no rush. Has anyone else dealt with this? TIA X

Stunting further growth still leaves him with a 2 inch difference?
My husband has a difference of about 2cms and has terrible hip and leg pain. He walks with a limp now.
2 inches is a huge difference.
Surely he needs the surgery?

I'd have a lot of questions before thinking of either option

Stunting growth ;
How will they stunt the growth?
How long for ?
Will the longer leg keep growing faster once the short leg has 'caught up ' and therefore be longer again

Increase growth
Is a halo the only option?
Risks of infection in the skin and bone ?
Who does the adjustments
Long term scars ?

On a practical level, how will he cope at school , bath / shower day to day activities etc

I have around an 1.5 inch leg discrepancy and foot over pronation. I had shoe raises as a child but my parents didn't push for surgery as I was walking and that seemed good enough. When I was older I was told I was no longer the ideal age for the type of surgery you are talking about.

I guess my questions would be if you opt for option one, will this eliminate the leg difference totally and if not at what age will your son be considered too old or not fit enough for the option two surgery?

Also, with either option one or option two how do the doctors plan to try to fix the leg pronation? If they don't it is likely to lead to knee, hip and spinal issues as everything becomes misaligned - so the legs may be roughly the same length but your son may not be able to walk because of the impact of pronation.

Finally, if your son is currently walking with the help of crutches or will be doing so if you opt for surgery ( after the initial wheel chair phase) please make sure his hands are protected with the best crutches and walking aides physios can supply rather than the standard ones intended for short term use.

Good luck with the decision making.

My 9yo DD has a leg currently nearly 2cm longer than the other. If the difference increases then they will carry out a epiphysiodesis. This link explains it quite well. https://www.limblength.org/treatments/lengthening-deformity-correction-procedures/growth-plate-fusion-epiphysiodesis/

Leg lengthening is considered quite controversial in the UK at least.

Thanks so much for your replies. I'm on my lunch break so will have to be brief.

As I understand it, stunting the growth (surgically) in the longer leg is a temporary solution. Clearly at age 8 he hasn't reached full growth! Also, his condition can cause early puberty. Initially, the Ortho surgeons said they wouldn't operate until puberty, whenever that may be. After 6 monthly monitoring they've decided surgery might be a better option given the rapid growth.

@SlowSloths Yes, I believe this is what is on the table for DS8. He's almost 9, sounds like our kids have similar issues in this respect.

He can walk/run although he is very clumsy and prone to falling over.

I immediately took a dislike to leg-lengthening surgery. Not only is it physically brutal, he has learning problems so would no doubt have to repeat a year at school.

Thanks again, back to work X

My friend had a bad motorbike accident when he was 19. It left one leg shorter than the other, to the extent that he walked on tiptoe on one side.

When he was about 50, he was told that he had to have the halo surgery or lose the use of his legs - his hips wouldn't stand it any longer.

He had the surgery and it was a success. He was bedridden for a while and had to turn a handle to stretch the shorter leg every so often until it was the required length.

Sorry i have no experience and I hope you get the answers and help you need

but without hijacking just on the off chance that anyone wants to help me having read this thread, I'm England based and I have three almost new pairs of size 6 Clarks trainers where I have professionally had the left sole raised by 2cm.

They were my mothers after a hip replacement left her with a significant leg length difference but barely worn.

Bill Bird did the work.

If anyone can make use of them or knows where or how I can pass them on please let me know!

Oh if only they were for the right leg !!!

If you are on Facebook I have just looked and there is a group for post surgery hip replacement and some people on there appear to have posted about problems with leg discrepancy after hip surgery so you may find that admin on that group would let you do a post ? I am sure someone would love them - I would have ...

Thank you so much! Who knew Facebook would have a group. I'll post on there in the hope they can find a home.

Hi, I know this message is from a while ago but my daughter is in a similar position. She also has a genetic bone condition which causes deformities and LLD is one of them,
The stunting growth surgery is basically done by them putting screw in the longer length leg until the other catches up. We had the same thing done for genu valgum too.
The hospital tell me they can only do this in the next 2 years as that’s likely when growth will stop - anything after that would have to be a full on limb lengthening surgery.
Hope everything turned out ok for you in the end.

Just reviving an old thread!

DS9 has an appointment with the Ortho surgery team at the hospital in a few weeks. He's had a CT scan of the pronated foot (done locally) so that will be reviewed by the Ortho surgeon.

@Notfeelinguptoit I love your username! I'm waiting to see what the surgeon has to say. Obviously I don't want my boy to have this kind of surgery, but if it'll save him worse problems in the future.....

I will update as and when. Thanks to everyone on the thread for the input.

Just an update, if anyone is still reading this thread!

DS9 saw the Ortho Surgeon. On his longer leg, his foot is pronated and is currently at a 45 degree angle.

They want to operate on that foot. He needs an osteotomy to correct the bones in order to straighten that foot. They don't want to do any leg shortening (or lengthening) surgery until he hits puberty (roughly 13 y/o).

So... he'll be having foot surgery in the next 6 months. This means 6 weeks in a cast afterwards. He asked the doctor "Am I going to die in the surgery?" 😭

I know it needs to be done, but I'm very worried about how he'll cope in a cast for 6 weeks and unsure how to deal with his fears. I keep telling him "Of course you're not going to die! It's just foot surgery, it's minor, people have surgery all the time!"

Thanks for reading. Am a bit stressed!

Oh, bless.

I had a bilateral osteotomy when I was in my 50s - pronation in my both feet caused problems with my big toes.

They decided to do mine with a pain block instead of a GA. I had headphones playing music. I was so relaxed, I fell asleep during the surgery!

ETA All the folk having surgery that day were oldies and we all survived...

In fact, my pal had surgery on her ankle on Friday and is now home - she's in her 70s.

Thanks so much for sharing this, I actually feel a lot better having read that.

DS will definitely be having a GA! But I'll tell him your stories as examples of 'there's no need to worry".

I hope your feet are doing well 😄

They are, thank you! It's been more than 10 yrs since the surgery now and they're going strong. :)

Great to hear! Thanks again for your input, I appreciate it X

Aww bless him 😢 .

Its so hard to explain to them it’s for the best when to them they don’t fully understand.
Sounds a big operation too with long recovery time.

If you can and your hospital allows could you arrange a visit prior?
I don’t mean this to cause distress or make you worry - my daughters autistic so didn’t handle it very well on the day of her 2nd operation.
Possibly because she already knew what was coming - also this was the time you had to take Covid tests prior.
There was a play worker who came round to the children and afterwards she said to me for anxious children(I think most children are anxious at the thought of an operation) they can set up a visit to the hospital prior to look round and make them feel more comfortable, I wish I’d of known this was a thing.

Prior to the op they let my daughter get changed into comfortable pjs and hold her teddy.
Bring lots of comfort things.
They also gave her ice cream after (she refused toast) made her a certificate and praised her constantly.

Its scary for you both but you just have to keep thinking it’s worth it in the long run x

Thanks so much. You've all made me cry.

But as I say to DS "They're happy tears!"

XXX

Honestly keep posting on here when you get worried or stressed or upset about it, or need advice. it’s a huge thing mentally for you to process. Xx

I’ve only just seen this post so sorry for the late information.

my son, born 1994 has dischandroplasia which was diagnosed at 2.5, at 4 he had his first op to straighten his leg and then went on at 6/10/13/15/28 to have lengthened procedures. He also had his right leg stunted to stop growth when he was 14. He’s now 30.

he has had the full round frame on his lower leg, and a external rod on his lower and upper (thigh). His last one was at 28 when he had an internal rod fitted (this is still fitted and will remain there for a few more months)

i don’t know where to start giving you advice tbh, but if there’s anything you want to ask, please do. When he first started the treatment early 2000 he was the only child in the uk with dischandroplasia and the treatment was new, he loved all the attention it gave him, doctors travelling to the hospital to see him etc, but as a parent it was very scary. If there is anything and advice you think I can give you then please feel free to ask.

the first advice I would give, is to familiarise him to the hospital procedures for the surgery, will he need to wear a gown etc, will he wake up in recovery with you, how he will be given a premed.

second, look at his clothes, pulling pants/trousers over his foot will could be difficult and painful. Because DS had a frame on, nothing could go over it, so I had to open the side off his pants / trousers and fix them with Velcro. I don’t know if you might need to do this but it would be worth checking so you’re prepared.

i assume he will be done weight bearing so see if you can get hold of some crutches and or a walking frame so he can get use to them. I don’t know if your hospital provides all this for you, if not start looking into where you can get them.

Just an update. DS9 has his surgery booked for 3 November. That's quick!

They say "Calcaneum lateral lengthening +- metatarsal cuneiform osteotomy".

The consultant surgeon seems to be great- no worries there.

All I know so far is that he'll be in a knee-high cast for 6 weeks. I'm a bit stressed because my ex partner, his Dad, wouldn't let me go to the last appointment where this was arranged. I don't drive or own a car. He said he couldn't stand to have me in his car for 4 hours. Eeek!

I've told him that I will be coming for this, b/c my boy needs his Mum and I need him. What I didn't tell him, is that if he refuses- I will make my own way there via public transport and involve the RCH social workers. Gah, I hope it doesn't come to that.

I've chatted to the local knitting/sewing group at the Library, and wow! They are on hand to modify clothes for him.

Taa for listening X

Oops, meant to say- this surgery is foot only. Not Leg X

Dr. Stewart Morrison MBBS FRACS(Orth) FAOrthA

He sounds pretty good.

At least you’ve got a date now so you can start mentally preparing, I’m not sure of this surgery will look it up, but the surgeon sounds really good.
I wish your son a speedy recovery afterwards.
I know how hard this will be for you right now but remain positive - it’s better he has this now then further down the line, and kids are so resilient he will bounce back quickly.

Your ex sounds like mine!!!
We were still together during daughters last one and it was during Covid so only one parent was allowed and I was told I wasn’t allowed to go because I can’t control her(she’d resisted being put under but she’s autistic too).

Is there any other way of you arranging transport?
in the uk they offer an ambulance to pick you up if your eligible, obviously I know it may differ here though.

Or make your own way there a day or so before and stay in a hotel nearby?

Do not be dictated to by your controlling and by the sounds of it(I know the signs!) abusive ex! Try and find a way there without having to spend 4 hours in the car with him. Xx

@Notfeelinguptoit Thanks so much for your words. I told him yesterday that I'll be coming, and he grudgingly grunted OK. I'll sit in the back and keep my head down.

There's a hotel attached to the Royal Children's in Melbourne so am thinking we can each book our own rooms, assuming DS needs an overnight stay and/or if we need to be there very early on the day. It's about a 2 hour drive from home.

I must say I feel less stressed just from this thread. Thanks everyone 💓