Stage 4 OA in Ankle

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petergd
petergd Member Posts: 12
edited 1. May 2013, 15:35 in Living with Arthritis archive
Hi,
I originally posted this in the "hello" post but thought it best to move it to this forum.

Ive been diagnosed with stage 4 OA in my right ankle. And im hoping someone whos had to deal with a similar problem is active on the forum.

The follow up consultant appointment was terrible i didnt know what q'w to ask and couldnt really work out whats going to happen next.

Still not hit me fully yet but im noticing the pain all the time now, i thought it was just the ankle resettling.

2 surgeries on it so far, 1 to stabilise a fracture and 1 to remove some bone that was stopping my ankle flexing. Original consultant talked about fusion but mentioned way in the future if it deteriorated. Maybe he didnt really know the extent of the oa until he got in there after the second op. i feel a bit let down tbh by the follow up consultant. There was no talk of the future at all, and I've come away scared as hell with no answers. hence my trawling forums for ideas.

The only thing i got was an apointment for some physio but im going to see a gp before the weeks out.

Sorry for the big post, hopefully, yes i can find some answers on here in other forums. Or the helpline? Any help or ideas very welcome.
Thanks
Peter

Comments

  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello Peter and a warm welcome to the forum..
    Sadly these awful appointments are not rare...it horrible when you come out and think to yourself what was all that about...and not a clue what next..If I was you I would give it time for my GP to get the letter and either get then to read it or ask for a copy...one tip when you go for appointments ask for a copy of the letters to be sent to you...I didnt and I am in the process of paying to get them
    Sorry I cant help with the ankle...but we have had a few on here that have had fusions and so on....if you go to the top of the forum and search ankles or ankle fusions it should come up...hopefully someone will be along with more info for you very soon....x
    Love
    Barbara
  • sturge8
    sturge8 Member Posts: 164
    edited 30. Nov -1, 00:00
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    Hi Petergd

    How and when did you fracture your ankle? How far apart were the two operations?

    I too suffer from post traumatic OA in my ankle, but to make matters worse I have it in my subtalar and my big toe joint all in the same foot. My ankle is a right mess, got all sorts of problems with it. I"m waiting for a consultation appointment too.

    Not sure what physio will do, you could try a free APOS therapy appointment and see what they can offer you.
  • petergd
    petergd Member Posts: 12
    edited 30. Nov -1, 00:00
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    hi Sturge8

    sadly that sounds a bit familiar, how old are you? you seem to have it worse than me currently.

    I have fractured it twice that I know of, once in early 2010 when I didn't even know I had fractured it, I assumed it was a really bad sprain because of the small slip i had and stayed off it for a couple of weeks. then just powered through. Looking back very silly but I honestly didn't think I fractured it. 2nd time in 2011 I did it I knew about it, that one I had to have an op to put two screws into the top of my ankle to stabilise it and was in plaster for a while.

    I then limped around for a year trying to get going again before realising that I should have had physio and hydrotherapy not sure why I wasn't referred but anyway. i went and the physio spotted OA or a bit of it in the ankle i'd heard doctors mention it in passing but didn't think it was that serious. Anyway hydro loosened things up a bit but this winter I'd had enough of limping around in pain so got myself referred to Leighton hospital in Crewe saw a consultant and x-rays showed a bone spur growing over the top of my foot and that's why I couldn't flex it apparently.

    Had the op to remove it 8 weeks ago went ok but while I was coming round the surgeon turned up for a serious looking chat but I didn't get most of it as I was coming round. Saw another consultant yesterday for my follow up appointment and she drops the stage 4 OA on me. She must have been new because she was pretty casual about it and wasn't forthcoming with info. I was a bit stunned so didn't get a chance to get myself together and react.

    and so here I am. will try and see a gp tomorrow and will see how physio can help beacuse regardless of the OA i walk with a severe limp at the mo. Tbh I've still no idea how bad this can get but well see.

    how are you with the pain? any ideas as you've suffered longer than me it seems.

    cheers
    peter
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hi, I have fairly advanced OA in both knees and both ankles and yes, it's pretty miserable. Do you walk with a stick? It should be held in the hand opposite to the affected joint and it can really help to ease some of the stress on that joint. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    hi Peter , cant help you with Osteoarthritis stage 4 because suffer with RA

    it has attacked both my ankles & had both ankle fused (Triple Arthrodesis) & will need both main ankle joints fused at some point as well as other joint my RA like to pick on , just want to say its well worth going for the fusion if you get a chance , bit less mobility but lot less pain
  • petergd
    petergd Member Posts: 12
    edited 30. Nov -1, 00:00
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    thanks for the replies everyone.

    I assume once I have more info and can see a specialist again fusion might be on the cards. How much is mobility reduced? obviously its slightly different for everyone but can you walk relatively normally?

    Also has anyone my age (35) had an ankle fusion on the forum just so I can get an insight.

    thanks for the help.
    peter
  • sailrib
    sailrib Member Posts: 327
    edited 30. Nov -1, 00:00
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    I'm 25 and had all my main joints and 7 of my forefoot mid foot joints in my left foot fused but my ankle back in 2011.

    Left with a lot of scars on my left foot and have lost movement but can walk, just fine. Only thing you have to be careful about, is uneven ground.

    Getting my right foot fused next week :)
  • petergd
    petergd Member Posts: 12
    edited 30. Nov -1, 00:00
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    Christ sailrib, that's a lot to deal with. are you still active with all that?

    Can I ask do you notice the loss of movement much after your ankle fusion? or have you got used to it? does it change how you walk to a large degree? for me to get rid of this pain i think it would be worth it.

    any advice appreciated.
    ta
    peter
  • sturge8
    sturge8 Member Posts: 164
    edited 30. Nov -1, 00:00
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    hi Peter

    i'm 32 years old. Your first injury was only 3 years ago. Seems quick for stage 4 OA to have set in. My injuries were accumulated over a period of time, ankle sprains mainly from when i was 16 to 28 years old. My OA hasn't been graded, but I know it bloody hurts all the time.

    I'm due to see a consultant in May so will learn from him a proposed treatment plan. I think fusion will only cause more problems to other joints, so I'm actively trying anything I can to avoid it.

    Read my posts on Stem cell injections and MBST. My view is if I do have to opt for fusion, I want to know that I have tried everything in my power to avoid it.

    I hope to give another stem cell injection another try, just at the planning stage at the moment. I think we live near each other if you are Crewe based.

    What treatment plan did the second consultant offer, or was it just physio?
  • sailrib
    sailrib Member Posts: 327
    edited 30. Nov -1, 00:00
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    petergd wrote:
    Christ sailrib, that's a lot to deal with. are you still active with all that?

    Can I ask do you notice the loss of movement much after your ankle fusion? or have you got used to it? does it change how you walk to a large degree? for me to get rid of this pain i think it would be worth it.

    any advice appreciated.
    ta
    peter

    I didn't really notice it but I was in so much pain that I wasn't really moving my foot like people should for about a year before surgery.

    Now I've had it done, I can sail normally. Sailing is my main sport and before surgery, I was in too much pain to really enjoy it.

    You very quickly adapt to limited movement, I find.

    I'm only get caught out on uneven bits of the path that I hadn't noticed before hand when walking :)

    My surgeon did say other joints will be under more strain now but for me, he said I'm unlikely to have any more problems until I'm in my 40s.
  • petergd
    petergd Member Posts: 12
    edited 30. Nov -1, 00:00
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    sturge8 wrote:
    hi Peter

    i'm 32 years old. Your first injury was only 3 years ago. Seems quick for stage 4 OA to have set in. My injuries were accumulated over a period of time, ankle sprains mainly from when i was 16 to 28 years old. My OA hasn't been graded, but I know it bloody hurts all the time.

    I'm due to see a consultant in May so will learn from him a proposed treatment plan. I think fusion will only cause more problems to other joints, so I'm actively trying anything I can to avoid it.

    Read my posts on Stem cell injections and MBST. My view is if I do have to opt for fusion, I want to know that I have tried everything in my power to avoid it.

    I hope to give another stem cell injection another try, just at the planning stage at the moment. I think we live near each other if you are Crewe based.

    What treatment plan did the second consultant offer, or was it just physio?

    Hi yes im in Cheshire, Leighton is nearest. I broke my ankle a year before that as well but powered through. (didnt realise it was broke, thought id just sprained it badly again) and was always spraining it badly for years previous. (v similar story sadly) Probably started the OA then I suspect, seen tons of people since and no one really brought it up in great detail so I just went with it.

    Apparently I have high arches and that was the main reason I was always going over on them?

    Will scour your posts tomorrow ta, re treatment 0. she was useless and I was confused as hell at the time so got nothing from it.

    Saw a gp today who was also a bit meh. Came away with a small pep talk and not much I didn't already know. Physio tomorrow, hopefully with a little weight loss, physio and some meds that take the edge off it will be manageable for now.

    Still in limbo really, no "action plan" to speak of I will carry on with the physio and what not for the next 2 months see where I am.

    cheers.
    peter
  • petergd
    petergd Member Posts: 12
    edited 30. Nov -1, 00:00
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    sailrib wrote:
    petergd wrote:
    Christ sailrib, that's a lot to deal with. are you still active with all that?

    Can I ask do you notice the loss of movement much after your ankle fusion? or have you got used to it? does it change how you walk to a large degree? for me to get rid of this pain i think it would be worth it.

    any advice appreciated.
    ta
    peter

    I didn't really notice it but I was in so much pain that I wasn't really moving my foot like people should for about a year before surgery.

    Now I've had it done, I can sail normally. Sailing is my main sport and before surgery, I was in too much pain to really enjoy it.

    You very quickly adapt to limited movement, I find.

    I'm only get caught out on uneven bits of the path that I hadn't noticed before hand when walking :)

    My surgeon did say other joints will be under more strain now but for me, he said I'm unlikely to have any more problems until I'm in my 40s.

    cool, I think its the way to go, probably a while away yet. I'm gonna see how I go for now but ta for the info.

    cheers
    peter
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