KNEEtalk

The WAITING ROOM => GENERAL KNEE QUESTIONS and comments (good for new threads) => Topic started by: Tuggers1994 on August 05, 2020, 07:04:00 AM

Title: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 on August 05, 2020, 07:04:00 AM
Hello everyone,

This is my first post on here but I've been lurking about for a while.

A bit if background:
For the last 20 years (I'm 26) I've been struggling with first ankle pain and then knee pain. The knee pain has now got to a point where I can walk for 10-15 mins and that's pretty much it. Driving, sitting in one position and standing for any length of time are all difficult.

I've seen the GP numerous times about this and was dismissed with growing pains when I was younger. As I got older I was referred to podiatry for insoles as I have flat feet and have had many referrals for physio which does nothing.

In a hope of getting the GP to take me seriously I saw a private orthopedic consultant yesterday and have finally been diagnosed with miserable malalignment, for which he has said I will need derotational osteotomy of my tibias at least and possibly femurs as well but he wasn't sure without further imaging. He wanted me to get a couple more scans done (MRI and rotational CT) and then see his colleague who is a 'rotational geek' in London next week to discuss a surgery plan (at about 15k per leg - which I don't have)

Now I have some sort of proof there is actually something wrong with the alignment of my legs I'm hoping the GP will take me seriously. Has anyone got any experience of having derotational osteotomy done on the NHS?

I have spoken to someone a colleague knows who had it done (in Bristol) and they had a Taylor Spacial frame as apparently it would be too much to derotate all in one go. From what I can make out this private consultant would cut and pin the bone and then you're up and about in a couple of weeks so now I'm very confused! I'm not keen on the idea of a frame as I think it will gross me out and obviously takes a lot longer but if that's the tried and tested way of doing things I'll go with it.

I've also spoken to my old physio and she said Basingstoke do a lot of this sort of thing - long shot but had anyone had surgery there to be able to tell me how they do it?

Sorry this has got so long, but if you made it to the end, thank you 😊
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: vickster on August 05, 2020, 09:14:14 AM
Sorry to hear of your knee issues.

Thereís a list here of surgeons who undertake osteotomies (not necessarily derotational), some will have an NHS practice, some may be private only.

https://www.kneeguru.co.uk/KNEEnotes/primers/whos-who-knee-surgery/whos-who-osteotomy-knee-pain-angular-realignment

Who is the Ďrotational geekí in London? Maybe s/he has an NHS practice? Indeed, many surgeons do actually do both private and NHS and one you see privately may be willing to transfer you to their NHS list.  If you look them up on the private hospital website or the Bupa consultant finder, itíll usually say if and where they have an NHS practice.

If you do need to go the private route, most hospitals will offer a payment plan to pay in instalments which may help with affordability.

Good Luck :)
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: The KNEEguru on August 05, 2020, 09:23:25 AM
Mike Risebury and Sam Yasen run an annual osteotomy course in Basingstoke and both have NHS posts. (https://www.basingstokeknee.org/).
Matt Dawson and David Elson do a sister course in the north and also have NHS posts. (https://www.northernosteotomy.co.uk/)

All have a great deal of experience in realignment osteotomy, but I imagine they also do plenty of derotations.

https://www.kneeguru.co.uk/KNEEnotes/knee-surgeon/dr-mr-michael-risebury
https://www.kneeguru.co.uk/KNEEnotes/knee-surgeon/dr-mr-sam-yasen
https://www.kneeguru.co.uk/KNEEnotes/knee-surgeon/dr-mr-matt-dawson
https://www.kneeguru.co.uk/KNEEnotes/knee-surgeon/dr-mr-david-elson

Professor Adrian Wilson was one of the founders of the Basingstoke group, but he is now Private only (London) where he is part of the London Osteotomy Centre with Raghbir Khakha and three European experts, where they are definitely experienced in derotations - https://os.clinic/the-london-knee-osteotomy-centre/

https://www.kneeguru.co.uk/KNEEnotes/knee-surgeon/professor-adrian-wilson
https://www.kneeguru.co.uk/KNEEnotes/knee-surgeon/dr-mr-raghbir-singh-khakha

Mr Khakha has an NHS post at St Thomas's in London.
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: The KNEEguru on August 05, 2020, 09:25:55 AM
If you search from the searchbar above - 'derotation osteotomy' - you will find plenty of people who have researched and/or gone through this procedure. You can PM (private message) them if you have PM rights, which is easy to achieve - you need 20 posts but can build them up in the games room... (security system)
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 on August 05, 2020, 10:59:42 AM
Thanks for the replies.
 
It was Adrian Wilson I saw and the 'rotational geek' is Ronald Van Heerwaarden but he doesn't do anything on the NHS.

I've put everything on hold for now as I have exams in a couple of weeks and things were moving a bit quick on the private front for me to get my head round! What I might do is get the worse leg done privately (which I think is actually the less twisted one of the 2) while the NHS referral hopefully plods on in the background. I have made an appointment with a GP so will see what they say about NHS referral and go from there.
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: vickster on August 05, 2020, 01:07:22 PM
Can Adrian Wilson suggest someone with an NHS practice so your GP can focus the referral to the right hospital under choose and book?
I doubt your GP has a clue where to send you.
Where in the country are you?
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 on August 05, 2020, 06:00:00 PM
Good idea Vickster. You're probably right about the GP not knowing where to refer me, I saw one orthopedic guy on the NHS and he didn't have a clue about rotational issues, he was only concerned with the ligaments in my knee which he said we're fine so he discharged me.
I have asked and they recommend his colleague Mr Raghbir Khakha who works from the BMI London Independent Hospital.

I think I need to see the GP armed with all the information I can.

I'm based in Wiltshire.
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: vickster on August 05, 2020, 06:08:57 PM
Yes, even dedicated knee specialists have sub specialisms or specific expertise or interest.

I watched a kneeguru webinar recently with Mr Khakha and was impressed by his knowledge and delivery. Certainly heíll be on my list when my current specialist retires (hopefully before I actually need a knee replacement!)

Good luck getting referred (heís at Guys NHS I think?)

https://www.kneeguru.co.uk/KNEEnotes/knee-surgeon/dr-mr-raghbir-singh-khakha
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 on August 05, 2020, 06:28:54 PM
I've watched some of his YouTube videos and was impressed that someone 5 weeks post osteotomy could fully straighten their leg and bend the knee just over 90į. And no Taylor Spacial frame in sight  😊

Looks like you're right about Guys, I just copied and pasted what his secretary put on an email to me!!

Thanks for all your help, all the best with your hopefully far in the future knee replacement!
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: 3diwk on October 03, 2020, 04:56:18 PM
I've watched some of his YouTube videos and was impressed that someone 5 weeks post osteotomy could fully straighten their leg and bend the knee just over 90į. And no Taylor Spacial frame in sight  😊

Looks like you're right about Guys, I just copied and pasted what his secretary put on an email to me!!

Thanks for all your help, all the best with your hopefully far in the future knee replacement!



Hi, Iíve recently had this surgery done at UCLH. If you donít have private health thereís really no need to pay for this privately. Itís a really significant thing to do so donít believe a little bit of advertising you see on YouTube. I suggest you see a specialist in complex deformity correction (any limb reconstruction unit) they deal with this routinely and much more complex things. You will have fantastic care and be supported in an MDT environment.

You could see either David Goodier or Peter Calder at the Royal National orthopaedic Hospital - they are truly world experts.  But I suspect there are limb reconstruction units local to you. Perhaps in Oxford?


A frame sounds bad but it does allow for a very accurate correction and minimises the risk of nerve injury and major complications. On the femur they would only use a plate or nail. You can immediately weight bare with a frame.

With the double rotational  osteotomy you will inevitably change the alignment of your leg. So if you donít use a frame, you might end up becoming a bit bow legged or knocked kneed. The frame will allow your surgeon to precisely correct all your deformity to the degree. And it should really only be on for 2/3 months max for pure de rotation.

You donít want to end up with a huge bill if there are complications and youíre much better served being in a specialist unit, which is audited and regulated  - itís true some  knee surgeons do carry out rotational osteotomies but not routinely.
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 on October 03, 2020, 08:28:42 PM
I've watched some of his YouTube videos and was impressed that someone 5 weeks post osteotomy could fully straighten their leg and bend the knee just over 90į. And no Taylor Spacial frame in sight  😊

Looks like you're right about Guys, I just copied and pasted what his secretary put on an email to me!!

Thanks for all your help, all the best with your hopefully far in the future knee replacement!



Hi, Iíve recently had this surgery done at UCLH. If you donít have private health thereís really no need to pay for this privately. Itís a really significant thing to do so donít believe a little bit of advertising you see on YouTube. I suggest you see a specialist in complex deformity correction (any limb reconstruction unit) they deal with this routinely and much more complex things. You will have fantastic care and be supported in an MDT environment.

You could see either David Goodier or Peter Calder at the Royal National orthopaedic Hospital - they are truly world experts.  But I suspect there are limb reconstruction units local to you. Perhaps in Oxford?


A frame sounds bad but it does allow for a very accurate correction and minimises the risk of nerve injury and major complications. On the femur they would only use a plate or nail. You can immediately weight bare with a frame.

With the double rotational  osteotomy you will inevitably change the alignment of your leg. So if you donít use a frame, you might end up becoming a bit bow legged or knocked kneed. The frame will allow your surgeon to precisely correct all your deformity to the degree. And it should really only be on for 2/3 months max for pure de rotation.

You donít want to end up with a huge bill if there are complications and youíre much better served being in a specialist unit, which is audited and regulated  - itís true some  knee surgeons do carry out rotational osteotomies but not routinely.


Thanks so much for this.

I had an appointment at Great Western orthopedics and they referred me to the limb reconstruction unit at Oxford and I have an appointment in about 10 days so we will see how that goes. Hopefully I might finally start getting some answers.

I think I have accepted that it will probably involve a frame and to be honest I would rather it was done properly so everything can realign gradually and be tweaked on the way if needed rather than go for a 'quick fix' that ends up causing more problems.

I assume you had a frame? If you don't mine me asking... How long were you off work for and how long was it before you were up and about and feeling relatively ok?
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: 3diwk on October 05, 2020, 05:16:34 PM

So we debated it frame vs plate and like you the thought of having a frame is fairly upsetting. I had a plate on the tibia and femurr and whilst the surgery went well, it did slightly change the leg alignment.

If I did the other leg I would use a frame to make sure you can adjust the alignment after the operation.. Theoretically all osteotomies can be done with a plate the problem is the accuracy and safety.. So it really depends on your leg alignment: theyíll do a long standing  X-ray to see how straight your leg is because you might need to change both your rotation and your alignment. If your leg is perfectly straight, and the rotational correction  is not that big then a plate is more reasonable.

In my experience the tibia is much much easier then the femur. If you can get away with just doing the tibia then I think your recovery will be very quick. So after 6 weeks you probably wonít be in any pain at rest but it take  like a year to fully recover - I lost a huge amount of muscle on the femur and itís still really weak. I think getting your muscle in top shape beforehand is  really key. I didnít do that!

Some surgeons prefer to do femur first. And only do the tibia is your symptoms donít resolve. Thatís definitely an option, depending on your rotational profile.

Itís not a commonly performed procedure in the UK - mostly because rotational deformities are generally well tolerated. If youíre just in minor pain then physiotherapy could help. For example, you probably have significant internal rotation on your hip, and with physiotherapy you might be able to increase the external rotation on your hip and walk with your feet slightly outwards. The pain and instability comes because your femur is going in one direction (internally rotating) and your tibia is going in the other direction (externally rotating) but the hip does have a huge range of motion  that you can potentially increase with physio. That said, I had significant instability in my knee and felt the operation was worthwhile.

Whether you have a plate or frame, if itís pure rotation you donít lengthen the bone (they just cut the bone, rotate it,  and compress the broken pieces together) so it heals quickly. I would expect 2 months max; and if they need to lengthen the bone a little to straighten the leg then 3 months.

Because of lockdown I didnít return to the office.! But I think youíd need at least 3 months off work. But you could work from home after 3 weeks.

Youíve been referred to one of if not the best  place and theyíll definitely give you an honest opinion. Have you had your CT scan yet?


Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 on October 05, 2020, 08:50:02 PM
I haven't had CT scan yet, had a long leg standing x-ray which the report said was fine so hopefully just rotational.

If I walk with my knees forward my feet stick out 40-50į which is probably why I always had pain in my ankles when I was little. I can remember Dad keep telling me to walk with my feet straight, in hindsight there was probably a reason I didn't!

I have done so much physio over the years and until the last few years have been able to function reasonably normally but it has got to a point now where the pain is really impacting my quality of life. I have started swimming again now the pools are open in an attempt to build up some muscle and general fitness but even that is making the pain worse. Physio's catch phrase seems to be 'push through the pain' but they aren't the ones lying awake at night in pain are they?!

Thank you so much for your replies, it's really helpful to know that next time round you would go for a frame and why.

I'm not sure how much I'll find out next week, the letter said to allow several hours incase additional investigations are needed so whether they try and get all the imaging done in the same visit I don't know. As a rough idea, how long after your initial appointment was the operation? I know it will vary from hospital to hospital and covid has probably made a difference as well!
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: 3diwk on October 06, 2020, 09:47:44 AM
It was a 2 month wait - so hopefully you shouldnít wait long - normally the waits for that kind of surgery shouldnít be too long. Theyíll understand itís a psychologically difficult thing to do. Iím not sure what the situation is now with covid. Youíd hope that big operations like osteotomies get prioritised.

Did you see Adrian Wilson - what did he say?
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 on October 06, 2020, 07:50:11 PM
I did see Adrian Wilson, he wanted me to see Ronald Van Heerwaarden after I had rotational CT scans and MRI on both knees. His letter said:

On examination, she stands with both patellae squinting and facing one another.  She walks with external rotation with out-toeing. She clearly has external tibial torsion and kneeing-in. Examining  her  supine,  she  has  a  full  range  of  motion  of  the  knees.    Both  patellae  sit  laterally placed.  Not overly unstable at 30į with a firm end-point.  Both patellae are slightly high.  She is not particularly apprehensive. She is non-tender around the joint line.  The  collaterals and cruciates are intact. There are no effusions.  In  terms of  her  hip  movements, she  has, as  one  would  expect,  increased femoral  rotation consistent with anteversion. She has 10į to 15į of external rotation versus 70į of internal rotation. She has approximately 60į of external rotation of the foot.  In  summary,  this is primarily  a  tibial  torsion issue but there is a degree of femoral antetorsion here as well.

However the consultant at Great Western said my hip range of movement was normal so not sure what the verdict on them will be unless range of motion and rotation are 2 different things?

2 months sounds reasonable, I was hoping the wait time would be shorter as I assume all hip and knee replacements are on completely separate lists.
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: stillwaiting 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)
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: 3diwk 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.

Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 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. 
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Lakeswim03 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.
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: 3diwk 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.
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 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!
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: 3diwk 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.

Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 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!
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Freya 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?
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Freya 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.
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 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!!
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Freya 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
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 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;
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Freya 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]
Title: Re: Miserable malalignment derotational osteotomy UK NHS
Post by: Tuggers1994 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