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proposed ankle replacement?

Posted , 6 users are following.

dbee
dbee

Hello to anyone reading this.  Im 68  have an arthritic ankle which frankly I dont get any pain from, there is stiffness and im starting to limp, starting to get some slight burning sensations - cant run of course but Im told there is 5% cartilage left and consultant tells me it will get worse.  I dont take any pain killers at the moment.  He has suggested ankle replacement which I thought Great!  Had visions of long walks and pain free life in the future.  But Ive now after researching this operation - have discovered and read awful stories of continued pain and almost disability after people have had ankle replacement. Nerve pain and referred pain elsewhere.  it sounds horrendous,  Would anyone have made a different choice if they had known the outcome??  Would anyone have had a fusion instead and has anyone had fusion.  What is the outcome of that?  If anyon e can give me advise please let me hear from you.  Many thanks.

2 likes, 25 replies

25 Replies

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  • jim86105
    jim86105 dbee

    Posted

    Hi,

    i am in the same boat as you and I have put off doing anything until I really have to. My surgeon has suggested fusion and the out come of replacement  is very poor.  For what it's worth I'm going for fusion based on all my research over the past two years. The ankle and the elbow have poor out comes after replacement

    jim 

    • dbee
      dbee jim86105

      Posted

      Thanks for prompt reply -  Yes, I have yet to read of a really good outcome of this operation,  I am being recommended the Zenith TAR as its the latest I think.  I wonder also if there is anyone that has had that particular implant.

      Dbee

  • Barb2015
    Barb2015 dbee

    Posted

    Hi - there is no evidence at all that replacement has worse outcomes than fusion (if anything whilst it may have a higher need to require further surgery the evidence so far shows slightly better outcomes for a more natural movement post surgery); I know this for certain because I have opted to be part of a national clinical trial that is researching just that - which outcomes may be better for which type of people. The trial is call TARVA (total ankle replacement vs arthrodesis) and their website has some good information  and links on it  http://anklearthritis.co.uk (they also have a twitter account).  

    I had my replacement done a couple of weeks ago having done a lot of research - even though the need for further surgery at some point is likely, I wanted to really give the replacement and lots of physio a go; ultimately if it doesn’t work you can still have a fusion I believe - but not the other way round. It’s very much an individual choice and I would urge you to find out as much as possible. I am 51, there is a guy also in the trial a little older than me who was the first patient and he has a blog about it which is great to read and he is having brilliant outcomes 

    One thing I would urge you to remember when reading about other people’s experiences is that people more naturally write about poor outcomes - or seek answers from others on social media sites (which I do think are helpful) when things aren’t going well for them. If you have had surgery and it’s all gone well there is usually less need or desire to talk to others about it. Whichever route you chose ankle surgery tends to have a fairly long recovery period and you rely do get the outcomes you work for - I know because i had very major surgery 30 years ago following an accident which took both my ‘ankle bones’ off - and eventually I gained 100% movement back and could still go running. Unfortunately the inevitable osteo arthritis has now caught up with me - but only after 30 very active years. 

    Good luck whatever you decide - I’ll try and follow your progress !

    Emis Moderator comment: I have removed the links to the blogs as we do not publish these. If users want this information please use the Private Message service to exchange the details.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • dbee
      dbee Barb2015

      Posted

      Thank you for your reply and info, I have to say I am very much in  a quandry about this.  Im not good with pain, at least I can put up with it for a short while but it seems TAR is a long haul.  I have 2 grandchildren at the moment that I do a lot of child care with  4 yrs and 20mths.  I couldnt possibly do it if I were to be in constant pain and in plaster for weeks on end.  As you say  people do write about the negative  side  but it would be so uplifting if a few people who have had a really good experience could write here about it too.  Im thinking that at the moment Im not in pain - though my consultant did say better to do the replacement whilst the joint is still in a reasonable condition - I will delay it perhaps until children a little older.  Can you tell me where you have had your op done and which TAR prosthesis

      were you given.  Ive been offered Zenith.  Also how are you feeling now 2 weeks on.

  • Barb2015
    Barb2015 dbee

    Posted

    Hi - I have sent you quite a long reply but because I put links in it I've just relaised it's gone off to be moderated - oops !
    • dbee
      dbee Barb2015

      Posted

      Thank you Barb - I read your link with great interest and it showed me one thing especially - that I have not done nearly enough research.  You also seem a very positive person - essential for what you are putting yourself through.  Please keep up your blog as I will be following with interest on your progress.
  • Jpsotan
    Jpsotan dbee

    Posted

    Hello, I had inbone ankle replacement on October 8th of this year I am walking in my sneakers with out any ankle pain. This was the best thing I ever did. Un like you at this time I had so much pain I would grit my teeth every step I took. If you think of the worse took ach you could have that is what I felt with every step. I had great doctors and the day after the operation I had no pain at all not even from the operation. I have not taken one pain pill because of the operation. I had polio and I think I am the first polio victim that had this done. So far every thing is good
    • dbee
      dbee Jpsotan

      Posted

      Hello,  So  so good to hear a good report at last.  I  am eager to get as much info as possible.  I have learned that it is essential to find a good surgeon that has done this op  many times as the skill of placement of the TAR is paramount to success.  So my question if you dont mind to reply is where did you have it done, who was your surgeon and which prosthesis did he us for you.  Its remarkable you did not have any pain?? 
    • Jpsotan
      Jpsotan dbee

      Posted

      Hi, I had a wright medical inbone implant. I have to say the first time I went to the doctors they had 3 people from wright to talk to me and see the problems I was having. I had to get a ct scan and one of there people was there to make sure they were doing what they needed. They also had 3 of there best people at the operation one to assist the doctors and two to arrange every thing so the doctors did not have to wait for anything . They also had a mock up of my exact ankle that was made from a ct scan.if you go on there web site you can watch a video of the whole procedure. My doctors were Dr Feldman, Dr Mary Williamsand Dr Jean holwinski. I would highly recommend them. I have all there cell phones in case there was a problem. I have seen a lot of doctors in my lifetime having polio, there have been good ones and very bad ones I have to say these doctors are very good.i have X-ray pictures of my ankle with the implant if you would like to see them give me your e mail and I will send them .one thing that I was shocked at I never had to take pain medicine after the operation.hope this will give you a little info thanks joe  
    • dbee
      dbee Jpsotan

      Posted

      hello  thanks again so much.  I will check out the Wright implant  where did you have the operation done,  I know that one can get referrals to any hospital within reason, but for me the surgeon has to be a major consideration.  I will look your Dr.~Feldman up  and if you can Id be very interested to see you X-rays. 

      thanks.

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Jpsotan
      Jpsotan dbee

      Posted

      Hi , I had my operation done in Miami the hospital is in front of my doctors office. They took out your e mail address, my last name is sotanski and I use msn .com  . Dr. Feldman is semi retired but has done user 100 implants he assists in the operations. I am very happy with them. I can get you his telephone number. I don't think they let you put numbers here.
    • dbee
      dbee Jpsotan

      Posted

      Hello thanks,  but Im based in the UK   we do have many good surgeons here  -  just need to find a good one.
  • mary59576
    mary59576 dbee

    Posted

    HI dbee - I had total ankle replacement in July 2013.  the estimation for feeling something like complete recovery was 12 months.  I think it was 18 months before I felt like my ankle was strong again.  With ankle replacement, you have to be careful for the rest of your life.  Can't carry heavy weight, bounce on it, run, etc.  It still gets sore once in awhile and swells occasionally, but I feel lucky considering how much pain I was having and walking was becoming difficult.  I can walk for excercise, ride a bike, play with my dogs, etc.  I think the most important thing you can do is find someone who's done A LOT of these surguries.  I went to Dr. DeOrio at Duke in Durham, NC.  I did a lot of research and his name kept popping up as someone who not only was a leader in replacing ankles, but had fixed some botched jobs by other doctors.  He gave me the choice between fusion and replacement, but having an ankle that didn't have movement and the rest of your joints having to compensate resulting in future arthritis in those joints didn't sound like a good prospect to me.  As someone else on this thread said, there will probably be future surgeries, but who knows what the future will bring.  Today I can walk.
    • dbee
      dbee mary59576

      Posted

      Hello  than ks for replying.  I find the prospect daunting and Im trying now to locate a surgeon that does have this experience.  We have a specialist Horder hospital in orthopaedics but even their experienced surgeon has only done 3 ankle replacements in the last 12 months?? Does that constitute a high number,  doesnt seem so to me.  The recovery is a long time in view of the fact that I help out a lot with my grand children.  But thanks again for advice
    • Barb2015
      Barb2015 dbee

      Posted

      Where are you based dbee - Britain ?
    • dbee
      dbee Barb2015

      Posted

      Yes  based in South of England   Hastings
    • dbee
      dbee mary59576

      Posted

      thank you for replying,  I am considering all possibilities now.
    • Barb2015
      Barb2015 dbee

      Posted

      Hi dbee. If you look on the TARVA website (the clinical trail I am participating in) it lists all the hospitals and specialists who are involved. These are all consultants who specialise in ankles - both fusion and replacement - I am sure there are more but at least that is a good starting point. You can put your postcode in to search the nearest; and for something like this I think you might want to be prepared to travel to get specialist treatment. (my geography is shocking so I didn't look for you !) And did you know that you can use 'choose and book' on the NHS ? I chose my consultant first and then filled in my NHS choose and book form with my GP and waited to see him (nothing to do with the trial - that was just somehthng I got involved with later on).

      Also, I know you have said that your pain isn't too bad but just a slight warning from me. My lower level pain started in May and on 1st July I agreed to surgery, but then put it off as my mother was very ill. By the time I had it in Novemeber I had deteriorated so much I couldn't walk more than a few minuets and limped badly. Obviously we are all very different - but getting some really specilaust advice and a CAT scan should help.

      Good luck.

    • Barb2015
      Barb2015

      Posted

      And I should spell check !!
    • dbee
      dbee Barb2015

      Posted

      Thank you Barb,  yes I know that you can book your nhs hosp and that is what I have been trying to find out regarding surgeons.  Ive just written email to the Royal Orthopaedic Hosp. in Stanmore middlesex as they have a very good dedicated team that do ankle replacements.  Mr Goldberg and Mr.Dishna Singh.  I live on the south coast and would be prepared to travel to get this right.  How are you coming along since you had your op.?  Also Im aware of leaving things too long at the moment Im not too bad but have been advised sooner rather than later.
    • dbee
      dbee Barb2015

      Posted

      Hello Barb,

      Your last blog I read was that you were feeling   a little miserable post op.  You warned me not to read too many reviews from people post op as they are pretty horrendous and it would now seem even Ultraboxxer has also experienced unexpected pain from this operation.  What has been your feelings on this whole procedure since you had your operation.  I have read a few good reviews from all over the world and I wonder does it make any difference which prosthesis is used  or is it a combination of many factors,  ie age,  condition of ankle to begin with,  weight etc.  Would love to hear your thoughts. 

       

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