Banner - Hide this banner





Author Topic: Miserable malalignment derotational osteotomy UK NHS  (Read 2332 times)

0 Members and 1 Guest are viewing this topic.

Offline stillwaiting

  • MICROgeek (<20 posts)
  • *
  • Posts: 2
  • Liked: 1
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #15 on: October 06, 2020, 11:04:41 PM »
hey tuggers.  sorry to hear about your situation.  I know someone who has had a derotational osteotomy.  The best advice is to speak with someone who has personal experience . It's a rare procedure.  I can give your her email if you want, I don't think she would mind and I will ask her of course if it's ok.  My only advice is to get multiple opionons and do one leg at once.  My email is [email protected] I'll have to charge you tho.  (jk)

Offline 3diwk

  • MICROgeek (<20 posts)
  • *
  • Posts: 7
  • Liked: 2
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #16 on: October 07, 2020, 08:32:54 PM »

So your hip ROM is not the same as the torsion. The torsion is the twist in the bone. You can only see it looking down at the bone.  From the front your leg would appear perfectly straight. Thatís why you need a CT scan. But because you have a lot of hip internal rotation (40  is normal and very little hip external rotation it  is indicative of persistent femoral antetorsion - probably about 45 degrees (normal is 15-20 in a female)  And it sounds like you have about 50 or so degrees of external tibial torsion (normal is 27 in  a female)  So itís quite significant and not surprised youíre in a lot of pain! But if youíve had physio they should be focusing on increasing your hip external rotation range.

Itís not that uncommon actually. Whatís uncommon is having both. Lots of hip surgeons do femoral derotational  osteotomies, for example. Hope it goes well at Oxford. If youíre unhappy, I can definitely recommend a few surgeons in London on the NHS - but I suspect youíll get world class treatment in Oxford.


Offline Tuggers1994

  • MINIgeek (20-50 posts)
  • **
  • Posts: 23
  • Liked: 5
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #17 on: October 09, 2020, 09:15:57 PM »
The consultant I saw at Swindon said they do a lot of femoral derotations but he's not seen a tibia done there in the 12 years (if I remember rightly, was a long time) he's been there.

Physio has always tended to focus on my weak hip and glute muscles, only one ever tested my ROM in my hip and said I had femoral anteversion but never gave me any exercises for it. I think the reason my muscles are weak is walking with my feet straight for years and they have just compensated. I don't think my legs are particularly weak in their own right, the muscle balance is just different. If I use the muscles the physio says I should be using when I walk my feet shoot straight out sideways which is probably why I don't use those muscles.

I'm a bit apprehensive about Tuesday but hopefully I will finally get some idea of where we go next with this. Despite surgery being a daunting prospect I think I'll be more upset if they say they aren't bad enough for them to do anything with becuase that basically confines me to life on crutches if I want to do anything that involves more walking and it only gets worse as I get older. Any idea how much I'm likely to find out from an initial appointment? I know they won't have CT scans etc but I'm guessing they will have some idea? Will let you know if I'm not happy at Oxford, thanks. 
« Last Edit: October 09, 2020, 09:30:09 PM by Tuggers1994 »

Offline Lakeswim03

  • MICROgeek (<20 posts)
  • *
  • *
  • Posts: 6
  • Liked: 2
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #18 on: October 11, 2020, 12:49:13 PM »
hello tuggers,
Thanks for your post, I am following this with interest, and I'm sorry you are having to suffer from everything which goes with needing this sort of operation, but it sounds like you are speaking to all the right people and doing everything you can to come to a good diagnosis & decision hopefully.
 Sorry I can't help with your questions, I hope someone else comes along who can, but I just wanted to say good luck and let us know how it goes on Tuesday.

Offline 3diwk

  • MICROgeek (<20 posts)
  • *
  • Posts: 7
  • Liked: 2
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #19 on: October 13, 2020, 04:01:18 PM »
How did the appt go? I suspect theyíll want CT studies before recommending treatment? Hope it went well.

Offline Tuggers1994

  • MINIgeek (20-50 posts)
  • **
  • Posts: 23
  • Liked: 5
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #20 on: October 13, 2020, 10:29:27 PM »
I wrote an update but no idea what happened to it!

He has recommended derotations of both tibia but agrees with the consultant at Great Western that my hip ROM is normal.

He said my right leg will need doing with a frame as it is more twisted and the risk of compartment syndrome is too high but apparently there is the option to combine the frame with an internal rod so I would only need the frame for a few weeks and they could then remove it and put the pins in the rod. But I might just go with the frame on it's own for the sake of an extra 4-8 weeks.

He thinks my left leg will be ok with just the rod but the risk of compartment syndrome is about 10% which seems quite high to me. Is the rod what you had 3diwk?

He doesn't atm bothered about CT scans, I asked if I needed to get one done and he said no which seems a bit odd to me but I guess he knows what he's doing. I thought physio after would be pretty intense but it didn't sound like it would be but maybe it's different with just the tibias.

He's going to arrange another appointment nearer the time so I can ask questions and meet the frames team etc and we currently looking at early Feb for the first leg.

I'm so relieved to finally have some sort of plan, there's probably not many people that would be happy about having their legs broken on purpose!

Offline 3diwk

  • MICROgeek (<20 posts)
  • *
  • Posts: 7
  • Liked: 2
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #21 on: October 13, 2020, 11:50:14 PM »
That sounds sensible - they know what theyíre doing, you can tell clinically with torsion but a CT is more accurate. My surgeon used a plate - but a nail is also good as itís minimally invasive. The nail/frame combo is also a good option. Either way itís quick healing and I actually think it heals faster with just the frame because you get much more  compression. Itís good you donít need your femurs doing. The recovery will be significantly quicker.

There is a risk of compartment syndrome and nerve damage - this is minimised significantly with the frame, and itís very rare (less than 1%). If they just did the nail then my surgeon released the nerve to reduce the risk. The key is being in a specialist hospital - I donít think itís as much as 10% but it is a risk and the frame/nail combo sounds good. I actually requested this but my surgeon didnít like using nails.


Offline Tuggers1994

  • MINIgeek (20-50 posts)
  • **
  • Posts: 23
  • Liked: 5
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #22 on: October 14, 2020, 05:51:26 AM »
I assume the risk of compartment syndrome increases with the amount they have to rotate the bone but I don't know what the cut off is and how close my left leg is to it, maybe that's why he said 10%. That's a question for my list!

He was happy to do my left leg first which although less twisted is the one that gives me most pain.

He doesn't like using plates but I guess they're all different!

Part of me is thinking I'll go with frames for both legs as I'm not sure about the nail although I do wonder if I'd be able to sleep with a frame and I do like my sleep! It's a shame most of the information online is scientific journals and reports which are not light reading!

Offline Freya

  • MINIgeek (20-50 posts)
  • **
  • Posts: 20
  • Liked: 0
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #23 on: June 06, 2021, 07:52:07 PM »
That sounds sensible - they know what theyíre doing, you can tell clinically with torsion but a CT is more accurate. My surgeon used a plate - but a nail is also good as itís minimally invasive. The nail/frame combo is also a good option. Either way itís quick healing and I actually think it heals faster with just the frame because you get much more  compression. Itís good you donít need your femurs doing. The recovery will be significantly quicker.

There is a risk of compartment syndrome and nerve damage - this is minimised significantly with the frame, and itís very rare (less than 1%). If they just did the nail then my surgeon released the nerve to reduce the risk. The key is being in a specialist hospital - I donít think itís as much as 10% but it is a risk and the frame/nail combo sounds good. I actually requested this but my surgeon didnít like using nails.

Have you had the surgery on both legs? How are you doing now?

Offline Freya

  • MINIgeek (20-50 posts)
  • **
  • Posts: 20
  • Liked: 0
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #24 on: June 06, 2021, 07:55:10 PM »
I assume the risk of compartment syndrome increases with the amount they have to rotate the bone but I don't know what the cut off is and how close my left leg is to it, maybe that's why he said 10%. That's a question for my list!

He was happy to do my left leg first which although less twisted is the one that gives me most pain.

He doesn't like using plates but I guess they're all different!

Part of me is thinking I'll go with frames for both legs as I'm not sure about the nail although I do wonder if I'd be able to sleep with a frame and I do like my sleep! It's a shame most of the information online is scientific journals and reports which are not light reading!

Hey Tuggers! Have you gone through with your tibia surgeries? How are you doing?
Turns out my degrees of torsion are pretty bad and it looks like I'm headed towards surgery.

Offline Tuggers1994

  • MINIgeek (20-50 posts)
  • **
  • Posts: 23
  • Liked: 5
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #25 on: June 07, 2021, 02:23:02 AM »
I assume the risk of compartment syndrome increases with the amount they have to rotate the bone but I don't know what the cut off is and how close my left leg is to it, maybe that's why he said 10%. That's a question for my list!

He was happy to do my left leg first which although less twisted is the one that gives me most pain.

He doesn't like using plates but I guess they're all different!

Part of me is thinking I'll go with frames for both legs as I'm not sure about the nail although I do wonder if I'd be able to sleep with a frame and I do like my sleep! It's a shame most of the information online is scientific journals and reports which are not light reading!

Hey Tuggers! Have you gone through with your tibia surgeries? How are you doing?
Turns out my degrees of torsion are pretty bad and it looks like I'm headed towards surgery.

Hey Freya!

Everything got held up with Covid but I had my first op on the 26th April so I'm 6 weeks post op now (or is it 7? Can't be bothered to work it out!)

They did my right leg in the end as the plan was to do the second one Friday just gone but it got pushed back by a pinsite infection. They were hoping both frames could come off together which might still happen but atm I'm not even sure I'm going to put myself through it again.

Despite what posting this in the middle of the night makes it look like sleep hadn't actually been too bad but the pain has been exhausting. The problem tonight is some insect thought I was tasty, or in their way! I've been in a lot of pain over the last 2 weeks which I thought was just normal but seeing how quick it subsided after a few doses of antibiotics made me think a lot of it was probably infection pain and could have been prevented.

I went for just the external fixator on my left leg. Happy to answer any questions. I've also found Facebook frames support groups really useful so might be worth having a look.

I assume your torsion is giving you pain? If it's not and you can function at an acceptable level I really would think long and hard about 'fixing' it, it's a long road back to some sort of normality!

I was in hospital Monday - Friday and then back at work part time, from home, on the Monday after the weekend which was silly in hindsight. Everything was easy in hospital, which was when I promised my manager is be back next week to help her. What I hadn't factored in how much more exhausting daily living would be once I got home! Hospital was level, had a wet room, everything I owned was close at hand and I didn't really have to do anything all day other than get washed and dressed. I was so bored I actually washed my hair for something to do one morning! At home nothing was easy to get to, it's certainly not level or in any way designed with disabled people in mind. I couldn't even get comfy in my own bed to start with and Mum didn't know how to make me comfy in the same way the hospital staff did. I actually wanted to go back to hospital for a few days after I got home!!

Offline Freya

  • MINIgeek (20-50 posts)
  • **
  • Posts: 20
  • Liked: 0
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #26 on: June 07, 2021, 05:41:14 AM »


Hey Freya!

Everything got held up with Covid but I had my first op on the 26th April so I'm 6 weeks post op now (or is it 7? Can't be bothered to work it out!)

They did my right leg in the end as the plan was to do the second one Friday just gone but it got pushed back by a pinsite infection. They were hoping both frames could come off together which might still happen but atm I'm not even sure I'm going to put myself through it again.

Despite what posting this in the middle of the night makes it look like sleep hadn't actually been too bad but the pain has been exhausting. The problem tonight is some insect thought I was tasty, or in their way! I've been in a lot of pain over the last 2 weeks which I thought was just normal but seeing how quick it subsided after a few doses of antibiotics made me think a lot of it was probably infection pain and could have been prevented.

I went for just the external fixator on my left leg. Happy to answer any questions. I've also found Facebook frames support groups really useful so might be worth having a look.

I assume your torsion is giving you pain? If it's not and you can function at an acceptable level I really would think long and hard about 'fixing' it, it's a long road back to some sort of normality!

I was in hospital Monday - Friday and then back at work part time, from home, on the Monday after the weekend which was silly in hindsight. Everything was easy in hospital, which was when I promised my manager is be back next week to help her. What I hadn't factored in how much more exhausting daily living would be once I got home! Hospital was level, had a wet room, everything I owned was close at hand and I didn't really have to do anything all day other than get washed and dressed. I was so bored I actually washed my hair for something to do one morning! At home nothing was easy to get to, it's certainly not level or in any way designed with disabled people in mind. I couldn't even get comfy in my own bed to start with and Mum didn't know how to make me comfy in the same way the hospital staff did. I actually wanted to go back to hospital for a few days after I got home!!

Well congratulations on finally having this done! But I'm so sorry about the infection, you poor thing :( I'm glad the antibiotics are helping. You're not taking any pain medication? That insect must be enjoying whatever drug cocktail you're taking lol.
You said you went with the external fixator because of the risk of compartment syndrome right? I was surprised my doctor didn't mention this, he wants to do it with internal rods.

When do you think you will be able to do the next one?

Yeah the recovery seems brutal, which is why I've been avoiding this surgery for the past 2 years. How do you get around? Wheelchair? Crutches?
I know your main issue is the tibias but I'm curious about your femoral version, it doesn't need to be corrected?

My knees and hips have deteriorated very quickly in the last year, especially since my last round of PT in sep/oct and now I have back pain added to the mix. The only thing that gave me some sort of relief was celebrex. I was finally able to see a specialist 2 weeks ago, I was supposed to see him march of last year, but covid happened.

I was so happy to hear back from you, take care of yourself and I hope the infection disappears soon.

Also, Moms are the best <3

Offline Tuggers1994

  • MINIgeek (20-50 posts)
  • **
  • Posts: 23
  • Liked: 5
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #27 on: June 07, 2021, 08:17:58 AM »
I'm down to just paracetamol now which I'll probably stay on for a bit longer as it just ups your baseline pain threshold a bit (so I've been told).

I'm working hard on getting to be weight bearing on my right leg so that I'm not completely floored when I have the left leg done, if I do. If I do I think they're thinking towards the end of the month, I'm on antibiotics for 2 weeks so not sure if that affects anything but.my next appointment is on the day antibiotics finish and they were going to see how I'm doing then but he might have pencilled me in anyway. He said it makes no difference to them if I have the second op next month, in 6 months or next year! But I'd rather get it over and done with and get on with life!

I'd imagine with a internal rod recovery would be much quicker. I had a week post op with no adjustments then I was adjusting the frame for 3 weeks and it's very tempting to get them to just spin it while I'm out of it and wake up with a straight leg second time round! What worries me a bit with the nail though is they have to mess about with your knee to get it in and chronic knee pain is what I'm trying to get rid of! I mentioned this to the consultant though and he said they use them a lot for tibial fractures but the only people on the internet saying about chronic pain from it are the ones that have issues, you don't hear from all the people that never think about it again which is very true! Another thing that put me off is that if for whatever reason the nail has to come out it's the same process but in reverse. At least with frame once it's off there's no residual metalwork although I guess there's probably more scaring and you've also got pinsite care to do although that's minimal now they've mostly healed. Although if I'd done with the frame and nail option I would have had more scars on this leg, it's just what I do with the other one!
 
I'm on crutches and I got a wheelchair for going out and about in. It's also my personal chair with elevated leg rests! Makes you realise how the world is not designed for disabled people. Not being able to drive is what's really getting to me now but guess with a rod you might be able to much sooner?

They can't seem to agree on my femoral version so that's being left as it is. They seem to think it's mainly learned behaviour from permanent compensation - I didn't even realize until one day half way through adjustments I was walking and noticed my foot was pointing in at about 25į! No wonder I fell over it!!

Sorry to hear things have deteriorated so quickly for you, sounds like you need to do something sooner rather than later then. I'm under a limb reconstruction consultant which might be why he uses frames as well as nails etc? But I guess they're all different!

Let me know what you decide to do &#128522;

Offline Freya

  • MINIgeek (20-50 posts)
  • **
  • Posts: 20
  • Liked: 0
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #28 on: June 16, 2021, 10:45:18 PM »
I'm down to just paracetamol now which I'll probably stay on for a bit longer as it just ups your baseline pain threshold a bit (so I've been told).

I'm working hard on getting to be weight bearing on my right leg so that I'm not completely floored when I have the left leg done, if I do. If I do I think they're thinking towards the end of the month, I'm on antibiotics for 2 weeks so not sure if that affects anything but.my next appointment is on the day antibiotics finish and they were going to see how I'm doing then but he might have pencilled me in anyway. He said it makes no difference to them if I have the second op next month, in 6 months or next year! But I'd rather get it over and done with and get on with life!

I'd imagine with a internal rod recovery would be much quicker. I had a week post op with no adjustments then I was adjusting the frame for 3 weeks and it's very tempting to get them to just spin it while I'm out of it and wake up with a straight leg second time round! What worries me a bit with the nail though is they have to mess about with your knee to get it in and chronic knee pain is what I'm trying to get rid of! I mentioned this to the consultant though and he said they use them a lot for tibial fractures but the only people on the internet saying about chronic pain from it are the ones that have issues, you don't hear from all the people that never think about it again which is very true! Another thing that put me off is that if for whatever reason the nail has to come out it's the same process but in reverse. At least with frame once it's off there's no residual metalwork although I guess there's probably more scaring and you've also got pinsite care to do although that's minimal now they've mostly healed. Although if I'd done with the frame and nail option I would have had more scars on this leg, it's just what I do with the other one!
 
I'm on crutches and I got a wheelchair for going out and about in. It's also my personal chair with elevated leg rests! Makes you realise how the world is not designed for disabled people. Not being able to drive is what's really getting to me now but guess with a rod you might be able to much sooner?

They can't seem to agree on my femoral version so that's being left as it is. They seem to think it's mainly learned behaviour from permanent compensation - I didn't even realize until one day half way through adjustments I was walking and noticed my foot was pointing in at about 25į! No wonder I fell over it!!

Sorry to hear things have deteriorated so quickly for you, sounds like you need to do something sooner rather than later then. I'm under a limb reconstruction consultant which might be why he uses frames as well as nails etc? But I guess they're all different!

Let me know what you decide to do &#38;#128522;

Hey Tuggers!

Apologies for the very late reply, I've been traveling and super jet lagged at the moment.

How are you feeling now? Still on antibiotics?

I'm glad your doctor actually listened to you and used the frame, I honestly had no idea that chronic knee pain was a complication with the rod insertion until I read your posts about the frames, so thank you!

That's a relief to hear that it's not actually femoral version and just learned behavior, one less thing to worry about.

I'm actually scheduled for surgery in early August, so I'm trying to get as much information as I can before I send all my questions to the surgeon.

I would love to keep in touch, would you like to exchange emails? My email is [email protected]

Offline Tuggers1994

  • MINIgeek (20-50 posts)
  • **
  • Posts: 23
  • Liked: 5
Re: Miserable malalignment derotational osteotomy UK NHS
« Reply #29 on: June 20, 2021, 04:33:01 PM »
Hey Freya, I've sent you an email &#128522; let me know if you didn't get it















support