Ankle Surgery Options for Extensive Osteonecrosis and ununited fractures? (collapsed bone)

Hi folks

Apologies if there is overlap with other threads. I'm trying to be specific here try to parse the replies and not waste your time.

I saw other threads discussing fusion, TAR, distraction etc - and most of the injuries or symptoms seemed to more in the arthritis area (but not all I'm sure - there's lots I haven't read).

My quick story is a bad trad leading fall (of course) in June 2024. Compound pilon fracture, displaced comminuted fractures of distal tib and fib. Posterior dislocation of tibia thrown in for fun - which exited the skin at the back. Had ORIF 11.6.2024. Two plates 15 screws.

Thought I was doing OK (although I had been in a lot of pain since starting heavier PT in Oct/Nov so it makes sense now) until private consultant did a weight bearing xray a fortnight ago and caught the unthinkable - the bones have collapsed. Devastated was not the word but getting on with things. The hospital never performed weightbearing xray. They essentially discharged me at the start of November.

Quoting the CT report from last week "Conclusion: Extensive osteonecrosis distal tibia and superior talus with ununited medial malleolar and distal fibular fractures". 

The consultant I'm seeing has recommended fusion off the bat and won't entertain TAR or put anything else on the table. There is always a certain amount of 'clutching for straws' in these situations, but nonetheless I'm going shopping around as much as I can for surgery options with better outcomes. I was very very active before all this. Climbing, jogging, cycling, hiking - you guys know the drill :) 

If I end up with fusion there is life after it i know, but I'm 45 and gonna fight for something better until I know there's no point in fighting anymore.

I haven't come for medical advice obviously - I'm just asking has anyone gone a different route than fusion with similar symptoms?

If so what was done, who were the surgeons etc? Any info available online or that you could send me?

It's been a bit of a kick in the teeth after the toughest 7 months of my life, but doing OK. It could have been worse - although the next person who says that to me might actually get a slap in the face :)

Very grateful for any replies - thank you.

I'm based in Ireland by the way but would consider travelling within reason.

Since you are in Ireland I can say it could be worse and not fear a slap in the face, but you could be in an electric wheelchair guiding it around with a pencil in your mouth.I shattered my leg years ago and spent 5 months in devices and casts 

Thanks Kevin...I'll try to find a local to slap you

Gareth - 

Really sorry to hear about your injury - it seems like you have a pivotol decision to make in the near future. 

Not totally relevant but I also suffered a bad injury in June 2024 (compound fracture of my ulna and severely displaced / commiunuted radius with a severed ulnar artery, dislocated elbow and a broken vertebrae).  I still have some nerve issues now and have had 1 surgery to remove the hardware after the original ORIF in June '24.  

The mental journey has been the hardest for me and I'm still coping in spite of having a good prognosis of recovery / function.  

Anyways I wish you the best in your next phase - please keep us posted. 

Daniel K wrote:

Gareth - 

Really sorry to hear about your injury - it seems like you have a pivotol decision to make in the near future. 

Not totally relevant but I also suffered a bad injury in June 2024 (compound fracture of my ulna and severely displaced / commiunuted radius with a severed ulnar artery, dislocated elbow and a broken vertebrae).  I still have some nerve issues now and have had 1 surgery to remove the hardware after the original ORIF in June '24.  

The mental journey has been the hardest for me and I'm still coping in spite of having a good prognosis of recovery / function.  

Anyways I wish you the best in your next phase - please keep us posted. 

Thanks Daniel - appreciate it. Yes mentally this thing grinds you down which is a side that is impossible to explain to people. Daily pain, immobility and worry.

But hopefully by the end of this year I'll be in a better place, with some more resilience and a deeper appreciation of the simple things - which I already have after being in the shit for nearly 8 months now.

I hope you're progressing well - I found a Facebook group specific to pilon fracture sufferers that has been a massive support for me and a great place to get info and unload my troubles. Not sure if you've gone that route but I'd recommend it.

I wish you love and strength!

All serious injuries require time to heal and they teach you a new definition of the word patience and the value of fresh batteries in the remote. I am having my ankle replaced in two weeks and have a new supply. 

Kevinmurray wrote:

All serious injuries require time to heal and they teach you a new definition of the word patience and the value of fresh batteries in the remote. I am having my ankle replaced in two weeks and have a new supply. 

I think the problem is that my injury isn't healing and won't heal until there is another drastic intervention. I'm about as patient with recovery as I can be think. My life has been upside down since June last year. So I just want to get roadmap as soon as possible to ease the worry and start accepting what the outcomes might be. I would be delighted with ankle replacement at this stage - not to minimise how serious it is.

Thanks and best of luck with your surgery.

Gareth Ebbs wrote:

Thanks Daniel - appreciate it. Yes mentally this thing grinds you down which is a side that is impossible to explain to people. Daily pain, immobility and worry.

But hopefully by the end of this year I'll be in a better place, with some more resilience and a deeper appreciation of the simple things - which I already have after being in the shit for nearly 8 months now.

I hope you're progressing well - I found a Facebook group specific to pilon fracture sufferers that has been a massive support for me and a great place to get info and unload my troubles. Not sure if you've gone that route but I'd recommend it.

I wish you love and strength!

Thanks for the kind message and recommendation on the FB support group!  I found a wrist / hand one and found it very good.  

I also am going through mental therapy and using EMDR and talk therapy to practice more self-compassion and relieve my tendencies for perfectionism. 

Keep us posted - I'll check this thread every once in awhile. 

Don’t know if it’s possible for you but maybe just live with it for 20-30 years and then fusion? I have a non-union talus fracture from 1995. Haven’t seen TAR or fusion as worth it yet. It holds body weight most of the time, does what I need it to do.

I have lived with the arthritis in my ankle for a long time and likeTom k. did not need feel the need for surgery but now since it has gotten worse and the bone is getting older I decided it was time to have it. replaced.   So thursday is the day the ankle gets butterflied and replaced.

Tom K and Kevin - with respect - please read my opening post again. This is NOT arthritis (part of it is, and will be) - it is "Extensive osteonecrosis distal tibia and superior talus with ununited medial malleolar and distal fibular fractures "

my bones have collapsed and are not healing due to bloodflow issues from the injury.

what that means for me is pain and discomfort pretty much all day, and SEVERE pain while walking.

I do not have any other option than surgery - unless I want to destroy myself with strong painkillers all day every day until my foot needs amputation.

Hi Gareth, 

First, I sympathize with you, and I understand what you're goung through.  Over the years, I've had a half dozen surgeries on my knees, ankles, and feet, and now, at 52, am starting to realize that a total knee replacment is probably inevitable. For me, the hardest part is marshaling the enormous patience and will to get back in shape, get back climbing, get back doingb the things I love...and then accpe that I have to start all over.  Anyway, I get it. 

What does your doctor say about TAR?  In terms of knee replacment, basically everybody I talk to says do it as early/young as possible, when you are strong and can recover well. 

Does the same apply to TAR?  Is that even an option for you?  

If that is an option, I'm going to guess that TAR and the recovery will be your fastest and most efficient road back. 

I don't have a real sense of your injuries, but I get the feeling that bone is not going to heal, and unless there is some kind of "partial bone replacement" option (unlikely in such a critical weight bearing area) TAR is the only thing that will really work. 

And if that's not an option...go ahead and get it fused.  You can do plenty of sports with afused ankle, including cycling, skiing, climbing. 

I have a motto that I often repeat to myswelf (wuith great respect for all true adaptive athletes)...we are all adaptive athletes...or we will all be adaptive athletes as we get older and the injuries accumulate.  

There's a kind of pride in accepting limitations, working hard, comingb back, and doing the best with what you have.  

Good luck!

Bruno Schull wrote:

Hi Gareth, 

First, I sympathize with you, and I understand what you're goung through.  Over the years, I've had a half dozen surgeries on my knees, ankles, and feet, and now, at 52, am starting to realize that a total knee replacment is probably inevitable. For me, the hardest part is marshaling the enormous patience and will to get back in shape, get back climbing, get back doingb the things I love...and then accpe that I have to start all over.  Anyway, I get it. 

What does your doctor say about TAR?  In terms of knee replacment, basically everybody I talk to says do it as early/young as possible, when you are strong and can recover well. 

Does the same apply to TAR?  Is that even an option for you?  

If that is an option, I'm going to guess that TAR and the recovery will be your fastest and most efficient road back. 

I don't have a real sense of your injuries, but I get the feeling that bone is not going to heal, and unless there is some kind of "partial bone replacement" option (unlikely in such a critical weight bearing area) TAR is the only thing that will really work. 

And if that's not an option...go ahead and get it fused.  You can do plenty of sports with afused ankle, including cycling, skiing, climbing. 

I have a motto that I often repeat to myswelf (wuith great respect for all true adaptive athletes)...we are all adaptive athletes...or we will all be adaptive athletes as we get older and the injuries accumulate.  

There's a kind of pride in accepting limitations, working hard, comingb back, and doing the best with what you have.  

Good luck!

Thank Bruno - I can relate obviously. I'm muddling on through but it's been over 8 months now of daily pain and immobility. I think I'm bearing up as well as I could be but it really sucks.

Sorry to hear about your situation. Yes patience is key, and trying to stay in shape so the rest of me is not atrophying too much, but there are lots of options there. 

TAR was not an option for the first surgeon i saw but I'll be seeing at least 2 others in the next 4 weeks so I'm waiting to see what options they might provide. I may end up with fusion and part of me has already accepted that (you kinda have to right?), but I want exhaust other options first.

Yes I totally agree with the 'adaptive athletes' motto, I'm back swimming a fair bit, and contemplating the middle-aged man entry into the lycra zone of cycling :) - which I swore would never be me...but let's see what happens. I'm not too worried about getting fitness back once I'm mobile again - so hopefully I just don't do too much damage in the meantime with all this limping, posture issues and so on.

I know there is plenty of life after fusion but it's certainly very impactful for very active people, so if I can avoid it I can. I'll report back with any progress.

Thanks very much

My sample pool is unique, but I know quite a few folks who went through salvage surgery after surgery, years in pain...then chopped that fucker off and never looked back. My main partner weighed fusion vs amputation and elected for amputation and has only had more adventures since. He decided that he could be way more active with an amputation - not to say it's been easy, and they certainly are never baseline normal again, but normal went out the window with their initial injury. Surgeons don't like to talk about it because they often see it as giving up or a failure on their part, but it could be worth chatting with folks who have gone through it. 

My roommate did have a surgeon tell her she was 'too young and pretty' to be an amputee, so she bounced around til she found someone to do it. 

Sorry just to be clear...I've set up a thread asking for people's experience with surgical options for "extensive osteonecrosis...etc". 

Ane your suggestion is to look into amputation? Cmon...   

I actually have spoken to people who've had it when there were no other solutions on the table and when perhaps it was after years of torture. Given how painful this injury can be, I can imagine getting to that point, so as a result the thought of doesn't it scare me as much as it does the average joe.

But I ain't at that point...

Tks 

Hi Gareth, 

I just want to add a personal perspective to amputation that wasnt too flippant having undergone the procedure myself. Choosing this option is nuanced and not taken lightly. 

I had a similar experience: a pretty horrible pilon fracture as a result of a climbing accident in 2009. I actuallbroke both my ankles but my right ankle was the worse of the two.

While i didnt have osteonecrosis per se, the joint space collapsed in my right ankle rendering it pretty non-functional. I spent a year or so trying physical therapy with no success. I spoke to a few surgeons about an ankle fusion as I was told i was too young for a TAR procedure but was not convinced i would be able to resume all of my preferred activities. I also spoke to two ortho surgeons about a below knee amputation and chose to undergo a specialized amputation for my right leg - im a right below knee amputee.

You could call this an n=1 study - this was the best outcome for me. While an amputatuon comes with its own set of challenges by and large i was able to resume ALL of the activities i enjoyed prior to my accident - in fact i learned to trad climb after the fact and consider that my preferred climbing style (even those heinous offwidths).  I continue to run, mountain bike, hike, fish, climb and anything else that sounds fun.  There was some adjustment to new movement patterns but with the passage of time it’s no problem now. 

Recovery from an injury like yours is challenging to be sure. I wish you the best!

Pablo

Hi Pablo - I appreciate the nuance and the input. Sorry to hear about your situation and I'm glad the outcome has been good. I salute your decision I must say - a very, very courageous one. 

Here's my thinking for moment:

Although the mention of amputation made my stomach churn when I first heard it thrown around in support groups for pilon fractures, it doesn't now. I now imagine it as a viable option if things went south, and came to such a point where I was experiencing daily discomfort and pain. Especially given what I've been through so far. Pilon fractures are truly ghastly things.

But at this point, I'm certainly not even close to being there. Firstly, I'll be talking to surgeons to see if I can avoid fusion and do something else. Maybe TAR. We'll see.

If I'm satisfied that fusion is the only option, I've decided I'll go for that. I've spoken to people who've had it, and provided it's done well, there is lots of life after fusion although I would certainly miss running etc. It's too early to jump straight into something as intense and life-changing as amputation. I know climbers who are happily climbing with fused ankles and I know people who walk without limps with fused ankles. That's encouraging enough for me to be open to it.

Let's see what the next surgeons say - two to visit before the end of the month.

Thanks - I'll report back. 

Hi Gareth,

I had a bad bouldering injury and I have talus avascular necrosis (osteonecrosis). I’ve had it for the last two years. I got a vascularized bone graft and they removed my dead bone, filled it in with bone from my hip and cadaver bone a year ago - it was supposed to have a high chance of success, but it didn’t work for me. Might be something you ask about, though.

I know someone personally that got a total ankle replacement with talus AVN. It put metal on top of her dead bone and made her pain worse. She ended up electing for amputation after that and she says it’s the best medical decision she has ever made.

My talus AVN isn’t unbearable for my average day, but my next step personally is asking my doctor for an AFO brace to help offload the ankle joint for my longer days/hiking/tennis. I’m also planning to try shockwave therapy - some things say it helps, some say it’s quackery, but I think it’s worth a shot for me.

In the U.S., total talus replacements with total ankle replacements have become available in the last few years with a couple doctors. You may want to ask about this, but be careful that your doctor doesn’t put metal on top of any dead talus bone.