please help..Ankle Fusion, Fibula Misalignment, concerns, recommendations..??

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Hi there, thank you so much for giving up your time to read my post, if you have any kind of response please feel free to do so, I'd highly appreciate it!! 

My name is Ivonn, I am 20 y/o. I had leg surgery done on my fibula and ankle the morning after the car accident I was involved in January 2016. I now have 6 screws and 1 plate and been having complications ever since.. On Febuary (second time going in for a check up) they told me things are actually not looking quite right. My foot wasn't in a proper position in my cast so they had me switch to a Cam Walker Boot to get it adjusted to a 90 degree angle but not allowed to walk with it until later on around March. They had me take x-rays and saw that my fibula is healing but my ankle wasn't. The doc that was checking up on my leg said "lets have some x rays done and see if there's any sign of healing next time" and that's how he had me up until May. On May 2016 I went for a CT scan which showed NO HEALING & MISALIGNMENT. He said I need to get surgery done again so I had to go back with my Primary Doctor to get referred to an Orthopaedic Surgeon. Once I met with the surgeon he said I have Arthritis now and I need to go see a Foot & Ankle Specialist instead. I went back to my Primary Doctor, got referred again, turns out where I got referred to wasn't the correct specialist so I had to go back again & wait, then finally OCTOBER 31, 2016 I finally met with the correct foot & ankle specialist. What my specialist said left me speechless.... he said he doesn't know why they made me go through such a long process because with the results that are shown on my CT scan I should've recieved surgery that same week that I got my scan done and no one should ever be in a boot for 8 months long.

He took x rays and said my fibula is not in the right place (it's more foward than the place it should be), my fibula is also short and not the right length as it should, my ankle is nonunion (never closed/healed),he also said for being in the boot for so long I lost movement and my foot is VERY stiff. Specialist also said my arthritis is developing very quick..He said what he can do is perform surgery on me but I have two options.. 

MASSIVE SURGERY can be done but there's only a 5% chance that my movement from the foot would be saved and this surgery would have to undo everything that's been done. He would have to re-break my fibula, push it back to the place it should be aligned at, get a piece of bone from somewhere else (pointing around the knee) put it on the fibula to get it to the length it should, then redo the plate & screw from my ankle. But the problem with this surgery is that there's only a 5% chance my movement will be saved, healing will take much longer, risk of infection, nerve damage, etc., and if it does become a success my specialist is sure I will still need an ANKLE FUSION done in the future. 

the other option he gave me is an ANKLE FUSION. He said he would recommend I get the ankle fusion done because it'd be the fastest way to get me back on my feet & if I'm going to need it in the future why not just get it now and avoid going through the massive surgery with the risks involved..

I was left so shocked & worried I didn't know what to do..I was left froze I couldn't think of any questions at that very moment because of how shocked I was:-(.He gave me 2wks to think about what I want to do. I'm very confused becaused what if that 5% chance of saving my movement actually does become a success?! Also I have a question.. if I were to just get the Ankle Fusion now doesn't that also come with the same risks of infection, nerve damage, etc?? as well as with the massive surgery process? or am I incorrect?? 

I seen some stories where people had Ankle Fusion & still needed another type of surgery later ?

I know I'm not a teenager anymore but I'm barely going to start my 20's I still want to go to the gym, go hiking, be active, dance, and do things I like to do. & if I get ankle fusion I won't be able to do any of that ...but if it was to come to that I know I'd just have to accept the new lifestyle I'd have and learn to adjust.. 

Please if anyone can be kind enough to give me a reply I would really appreciate it!!! What would you recommend?? any advice? experience? any 1 going through the same thing or have ankle fusion already? I'd like to know how your experience is going.. please & thank you ! 

much love,

 Ivonn.

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  • Posted

    I personally would get a second opinion ,simply because you are so young. I'm 56 and my doctor said I was to young to have my ankle fused and he recommended ankle replacement which leaves you with a movable foot. Ankle fusion leaves you with a stiff foot. Permanent limp.

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    • Posted

      I was in a bad car accident when I was 18, I had my first ankle fusion when I was 30 and just had my fourth this past February. I was told that I was too young for ankle replacement surgery. Ankle Replacements do not last that long, you still have movement in your ankles after fusion surgery but it comes from the toe area.
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  • Posted

    I'm so sorry you are so young to have this much trouble I'm about to get an ankle replacement in a few weeks I had a head on collision almost 6 years ago. I'm a lot older almost 61 soon. I decided on ankle replacement over the fusion but if that's your doctors opinion he knows what's best. You are too young and need to heal quickly and enjoy your life. My injuries are very different and very severe my ankle was shattered and my leg broke in 3 places I hope you get the help you need my thoughts are with you

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  • Posted

    Hi Ivonn,

    Firstly I think how the first so called professionals have treated (or rather not) you is absolutely appalling and I would certainly seek legal advice for their total incompetence and negligence of you.

    Secondly having had a fusion myself it is very restrictive of movement. If you join two pieces of wood into a l90 degree angle, that is how your foot and leg end up.

    This makes it very difficult to even walk up the slightest of inclines.

    You lose the ability to tip toe, makes it extremely difficult to get up and down a ladder.

    That's what I found personally and I'm 60 next years, so more years behind me than infront, unlike yourself.

    I have since had an ankle joint replacement carried out on 11th August this year and now have movement for the first time in 3 years and can move up an incline normally.

    Ultimately the choice is yours and not an enviable position.

    Have they ever discussed stem cell implant with you?

    At the end of the day, fight for what you want as it is your life not theirs.

    Best of luck.

    Jean

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  • Posted

    Hi ivonn,

    I had my ankle fused; tendon repaired, and big toe fused. I have 4 pins fusing one side of the ankle and 4 pins fusing the other side of the ankle and 3 pins and a plate fusing the big toe. Surgery was June 15th. I am in regular tennis shoes, with the surgery foot in a wide width and the other foot in a medium width and both tennis shoes are the same Sketchers style. I am walking pretty well. I used to run and was told "No way! No more running!" by my foot and ankle specialist. My ankle bends up and down, not full range; but it's okay. I concentrate on walking normally with each step. I walk my dogs down to the lake everyday and back up the hill from the lake (on a paved road ). I am able to do that. I have stairs at work. They are fine. I am 58, but young for my age. I worked out at the gym in my walking boot with crutches. Then in my shoes with crutches. Now finally no crutches. My ankle fusion is okay. I won't run, won't trust landing on that left foot while outdoor biking, won't trust swimming or standing in a shower, until I can walk a short distance with no shoes on. You are so young. My ankle and foot is fine fused, but that's with many years of running, biking, swimming and lots of dancing and many sports that I have enjoyed. I hope this helps you. I am so mad that the crazy doctors didn't immediately get you in to have you properly repaired again. Many good wishes are upon you for a wise foot and ankle specialist. Keep me posted. Yvonne

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  • Posted

    Hey ivonn

    I am 26 and u honestly think that you are to young for all these things ..i think u should go get a second opinion and talk to a lawyer about the doctor that did your surgery I hope things get better for you goodluck

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  • Posted

    hello ivonn,first of all keep calm and dont panic,the worst thing to do is get worked up,trust me i had an accident in 2001 where i dislocated my left ankle and after 12 years of carrying ait with a limp and a lot of pain i finally sought help,the end result was 2 lots of keyhole surgery,1 open surgery and then finally i was told by my surgeon to bite the bullet and have it fused,im 38 and he didnt want to do it at first but my hand was forced because of the arthritis and neverending pain,i had the fusion 3 and a half years ago and im so glad that i did.

    now......the first thing to understand about an ankle fusion is it can affect people in different ways depending on the damage already existing,in my case if you saw me you wouldnt even know that i had had it done,i can walk perfectly,dance(not that i could in the first place haha)wear normal shoes,play sports that doesnt include running i.e golf,theres not much limitation to it at all,the key things i need to remember are 1.no heavy lifting,this is because the bones lower down in my foot are taking over from the ankle and are not designed to be weight bearing,so its all about damge limitation,2 no long distance walking without breaks for the same reasons.other than that its upto you,

    people on here have mentioned an ankle replacement but i think youll find that a surgeon wont recomend that to a person of your age because they cant make a joint that can last long enough in a younger and more active person,i did ask myself and was told that a bloke like me who was a plasterer by trade and played golf would wear it out in about 5 years or so.

    i wish i had all the awnsers for you but all i can give you is my experience,i can move my foot left and right and up and down a good 3 inches and i have almost perfect sensation in it apart from slight numbness on a couple of toes,so nothing to right home about,it looks normal apart from a couple of scars that fade a bit more each year,now i wont say its an easy ride,i too looked it up on the internet before having it done and saw the horror stories myself,but they are rare,all in all its a long recovery (about 3 months in plaster for me,then 2-3 learning to trust it again)but now i use it like i did before the accident,so its not all bad,again it all depends on what the surgeon has got to work with.

    can i ask if you are in the uk?the reason is the surgeon i used,his name is dr andrew skyrme from the horder centre in crowborough east sussex,look him up on the web,he is brilliant at his job,when i asked him if i was going to beok for work ,walking and golf in the future he simply replied "of course you will,im doing it".now i dont know about you but that was music to my ears and i was totally relaxed from there on in.

    hes great and i cant recomend him enough,

    if you want to talk to me over the phone to ask any more questions just let me know,

    ankle fusions are not that bad,so dont be too scared,also i agree with jean65697 that you should change dr and get legal help for medical negligence,you deserve better treatment than this,a lot of places do no win no fee on this sort of thing,if you dont ask you dont get.

    take care and stay calm.

    Jay

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    • Posted

      Thank you!! After reading your response you helped me to calm down.

      Did you get your tibia/fibula fused with the talus??

      Sounds like you're doing just fine with the fusion, that's good to hear! Are you able to do some exercise with the fusion? .. I'm located in the U.S

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    • Posted

      Wat sort of fusion did u have, i had subtular hindfoot fusion and that means everything is fused

      No movement left or right. Almost nothing up n down so walking is near on impossible without shoes n special inners as shortened my R leg significantly.. ive got one in million pain tolerance.. sometimes not ideal as don't get enough pain killers and u second guess that knowing my tolerance is good then WHY am i complaining so much!! Maybe its just ME

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  • Posted

    hiye forgot to mention the risk of infection in all surgery is there,so try not to think about that,as youve probably already figured out "cross each bridge when you get there"also i have no limp and walk normal,remember check out these surgeons online beforehand,its up to you if they touch you or not,like every job on the planet,some are good,some are amazing.

    do your homework...

    dr skyrme didnt just say that i would walk normal but he even said hed meet me on the golf course when ive healed,big statement considering its my pivoting ankle during the swing which takes my whole body weight,it actually helped me stop slicing the ball somehow ha,maybe i should sell it as a tip to golf monthly.

    will check in tomorrow evening,take care

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  • Posted

    Hi Iconn,

    I had an ankle fusion at a very young age. I am now decidedly old and my ankle is just ducky.

    Mine is my driving foot. I would think that after living in a boot for 8 months adjusting to an ankle fusion would be easy.

    After surgery I was xrayed on a monthly basis. Three months I was walking. For the first year it would swell as the day progressed. But elevation and ice would bring the swelling back down.

    Sounds to me like this surgeon is on his game.

    I am a gal,,,high heels had to go...but guys don't typically wear high heels

    kind regards

    judith

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  • Posted

    Thank you all for responding!! You each helped me somehow with the info you've provided..

    I went back to the doc, I told him I'm more interested in the massive surgery than having a fusion & he said he believes that I won't be happy with the massive surgery because even if he does save my movements since I've lost most my cartilage I will be in pain and won't even want to move my foot.. Hes referring me to get another opinion from a different specialist who he says is one of the best and has 35 yrs of experience (he no longer performs surgery though). I will have to pay out of pocket to visit but I hope it's worth it and advises something different than a fusion......

    My doc still gave me an appointment to see him in a month after I've received the other opinions. He said he doesn't want me to feel that he doesn't want to perform the surgery on me, he just strongly believes that the fusion is my only choice at this point.... I hope that's not the case at the end.. Im also going to get refered to a different specialist through my insurance so I won't pay out of pocket like the other one, so I'll be hearing from two different specialist... Wish me luck, thank you all for responding! I guess you can say I'm venting here but it helps me not feel alone..

    Hope you are all doing well! I will come back to keep you updated.

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  • Posted

    Hi Ivonn

    May your second opions provide you with every possible option.

    Yes, please do post after your meetings

    kind regards

    judith

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