Monday 27 August 2012

Post Op.

Hey,
So I started writing this blog and then stopped feeling like no one would read it, until I saw someone had posted a comment and lead me to a page of numerous people just like me sharing their experience.

I am undergoing the external fixation method, rather than the one stage lengthening process. This means that for approximately 10-15 weeks I will have an external fixation device sticking out of my foot, and it is non-weight bearing.
Below is a picture of my left foot the day after the operation.


It has been 35 weeks since my left foot was operated on and 20 weeks since the external fixation was removed. I was made to wear a boot for 2 weeks and then runners for approximately 5 weeks. after that time I was allowed to walk bare foot or wear other shoes, however, after a couple of hours my foot was in quite a bit of bearable pain. I still experience pain when wearing certain shoes, or when my foot gets cold.
The first photo is the day before my 2nd operation. I had my 2nd and 3rd toe shortened on my right foot, and my 2nd toe shortened and 4th extended on my right foot.


It has been 13 weeks since my right foots operation and the external fixator is still attached. I was supposed to have to off 2 weeks ago but sadly there was a fracture in the new bone and I was told to keep it on for an extra 4 weeks. These past 2 weeks have been hard, I think mainly because I had been soo excited about getting it off that the news was devastating.

Below is an updated photo of my left foot, the shorted toes are still recovering, however I am so happy with the result and cannot wait to show my feet off in summer!
 My right foot kind of looks like a corpse (as my sister called it) but will get there in the end. I stopped turning it approximately 6 weeks ago, and even though it still looks short, should stretch out like the left foot and become normal.
Despite knowing how great I will feel after the recovery is over, spending close the 4 months on crutches, being unable to do simple daily tasks takes a massive toll on your emotions. At first you are always tired due to the medication, but after that wears off, boredom and agitation can take over. And the fact that I had to have both feet done, totalling 9 months in my room, depression can come too. I have tried hard not to take it out on others, but I have always been a person who tries to do everything by myself, and with that not always being an option now, I have found my mood swings are quite bad. If you consider this operation, know that the days will not all be easy, and you definitely need to find a hobby to keep you going, instead of just watching movies and tv series like I did the first 4 months. In saying this, I know I will not regret my decision to have the surgery and I am so grateful for both my parents for supporting me during this time.

I hope whoever is reading this is doing well and I would love to hear your stories!

18 comments:

  1. Hi! I'm so happy you decided to start documenting your experience again. You must be a very strong and brave individual to have both feet done. I don't doubt for a second that being confined for 9 months has taken its toll but you are almost there! Not much longer to go before the 2nd fixator comes off and you're freeeeeeeee! How did you end up with a fracture?? Did you fall? I'm sure that will heal quickly and you'll be putting this experience behind you. Btw your toe doesn't look short at all. It looks just fine! Take care :)

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  2. Hey! :) thank you for reading!
    Thank you, I must admit I do have a lot of bad days, but once its over I think I'll be the happiest person ever. I cannot wait for it to come off! I'm not entirely sure, my doc said it was healing really well, and decided to get me to start putting some pressure on it while walking (verrrry lightly) and after two weeks of that at my checkup he said there was a fracture. I was devastated because I had been so careful and hadn't hit it hard at all. Hopefully it is all better by my next checkup.
    :) thank you! I'm so happy with the result, especially since my other toes are shrinking to normal size! Cannot wait to wear some flip flops
    Take care! :)

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    1. Hi do u receive crutches and pain meds the same day of surgery and do you get a boot or a show please let me know my email is yolandaclaxton@icloud.com

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  3. Finally! Someone like me! I too have bilateral brachy and was going to do the one-stage for both feet at the same tIme. I wondered whts you thought of this and was it even an option. I have read that doctors (Dr Lee)only does this surgery one foot at a time, but I'm a working woman and I can't see taking off twice 4-5 months at a time

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  4. Hey! I have never ever read about someone having both either!
    My doctor would not do the one stage lengthening on me, he said there was more risks involved as our bodies sometimes reject foreign objects and may cause problems later on, or cause problems stretching the muscle to far/nerves etc. I wish I could have had it done though, it seems like such a fast process in comparison and you get to see instant results!

    I'm sorry to say but as amazing as it would have been getting both done at once, I think it would be extremely difficult as usually it is non-weight bearing procedure (both one-stage and external fixator from my knowledge) and unless you have someone that is able to look after you ie. help you shower and you are able to be bed ridden for the duration I don't think it is really an option...

    Although, I have read about a woman being able to walk after a week or so, and she had external fixation on both feet and said she went to the gym and everything! Fom my experience I cannot imagine walking on my feet with this device on. My doctor suggested I put a small amount of weight on it when I walk after the bone had healed a great amount and I unfortunately got a fracture and set me back 4 weeks. So I think it is extremely risky :(
    I wish I had some better news for you, I'm so sorry. I will keep searching for the link about the woman above but at the moment I can't find it.
    Are you living in the US? I know there are many doctors that currently do this surgery there and I'm sure they might be able to come up with a solution for you :)
    I'd love to hear how you go with everything, Nadia.

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  5. http://www.youtube.com/watch?v=InvEeJvtXQY&feature=plcp

    That is the video of the woman who had both done at the same time :)
    I hope that helps a little

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  6. thanks Nadia! My surgery is in about three weeks! I will have plenty of help with my mom. I live in the US, snd my doctor was against the external fixators. I guess each doctor has there own preferences. I plan on keeping in contact w/ you since we have Twin feet! and maybe i'll document because there are not enough of us (bilataral-brachys) . Thank you so much for writing this blog! I was watching a TV program when i found out that this deformity even had a name.

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  7. No worries :)
    How exciting! I'm so happy for you :). Yeah, one stage seems so much better in ways but I'm so glad the fixator has been removed!
    Please do keep in contact, I'd love to hear how everything goes for you, us bilateral-brachys must stay extra positive throughout this experience, but just know it will be over and you will be able to show off your feet in all those shoes we've dreamed about!
    :) I'm so glad people are actually reading it, and said that I have helped them in some way, I think you should write a blog, I wish I had documented my experience more, it makes time go a little faster haha.
    Oh how interesting! It was comforting to know it had a name, wasn't it? It made me feel like I wasn't alone and people knew how I felt.

    Best of luck,
    N

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  8. Hi! My name is marie and I also had a surgery on one foor. My external fixator is comming off in 3 weeks(hopefully) I think that my toe isnt as long as Id like it to be so when I red that you actually had some of your toes SHORTENED I couldnt help but ask! How was it, is it a hard procedure? Because I would like to shorten my fifth toe so that my brachy toe looks a bit longer! Thank you and I hope youre doing great!

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  9. Hey Marie :)
    How exciting! I hope it does come off! Give it time because the toe does extend about 1-3 mm when you start walking properly on it, as the bones become less compressed and the tendons stretch. But, if you do still want it shortened, the procedure isn't bad at all. You are able to walk on it as soon as you wake up from the operation. I had a little bit of pain but it was bearable. It takes months for it to fully shrink to its new size but I am very happy with my results :)
    If you have any other questions I'd be happy to answer them! Good luck with it all and thank you :)
    N

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    1. Hi, I just had my external fixator removed about 2 weeks ago. My toe shrunk and I’m going crazy trying to research if that is normal and it will stretch. I would hate to have gone through all this suffering with the surgery for nothing. Did that happen to you and did it stretch? My brachy toe was longer than the pinky and now it looks like the same size.

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  10. Well thank you for that amazing information and good luck<3

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  11. Dear Nadia,
    OMG !Your story is the same as me!! and am so glad that you have started a new treatment that can boost your self confidence and new life.Am really happy for you!!!
    However the worst part with me is am living in one of the poorest countries in Africa where awareness as to every thing is very low and I have to live hiding my self from even family members and even boy friend Sorry!
    I dont know why I develop such feelings and even I dont know how I can tell this to my BF!am afraid....you know it Nadia.
    Please Nadia do you know any thing that people who are from poor countries can be treated with very low cost you know I have decided to pay everything it costs to heal from such psychological trauma ....Nadia even I have decided to serve anyone who can help me in my treatment because I need to be free from such trauma.....
    Is there any way that could help me please...

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    1. Hey :)
      I still cannot believe there are so many of us out there, all feeling the same, it really helped me deal with everything.
      I completely understand how hard it is to let people in and tell them about it, but I honestly think it was the best thing I did. When I opened up to my boyfriend he helped me deal with it more easily, he didn't care at all, and said he loved me without the surgery, he was worried that it would be too dangerous and wasn't worth it.

      I am so sorry but I am not sure what you should do. I have had lots of people email me about unexperienced doctors that have caused them more pain than good, and would not know who to recommend. I understand how desperately you want it done, but know that there is a high risk with this surgery, some people find it hard to walk after due to pain if it isn't done correctly. Please be careful, looking 'normal' isn't worth spending the rest of your life in pain.

      I feel terrible that I am unable to help you. But please take my advice about letting people in, even if it is just one person. I am sure your boyfriend and family will love you no matter what, and if he or anyone else has an issue with it, they aren't worth it. It is a special part of you and all of us.

      Take care,
      N

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  12. I have the same case and just did the surgery in morocco and still waiting for results just started turnin the device like once per 2 days it was hurtin when i started turnin cos bine is stretchin as well as the skin so it s pretty hurtful but bearable for all those years of not bein able to show it s feet i think it s hurtin psycholgiacally cos eqch gime u pay attention to u r feet and u dont wanna show them and after all what is abnormal is abnormal and it has to be done cos it really disturbs cos my toe was taking off each time qmd it disturbed and i did all i could research on youtube and doctors x rays to be ridden from this and even for people who work u have to prepare for it financially and with u r work as for the cost here it s about 1500 euro as max pretty cheap comparin to us

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  13. Hellow nadia
    I got the same condition and i am hesitated
    As im getteing married in septmber
    And i dnt know when im going to be able to walhe probably after the surgery

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  14. Hi everyone. I just had the procedure done about two weeks ago. I have brachy on my right foot and have an external fixator in my foot. I have been turning the device now for five days. I can barely see a difference but am hopeful to see something soon. This has been a difficult process since I can not put any weight on it. I have developed muscle atrophy on my right calf. This has me worried since I go back to work in a week. I worry how I'm going to drive to work and get in and out of my car to use my scooter. Where there's a will, there's a way.

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  15. Hi this has really helped me a lot, my 14 year old has had the surgery almost five months ago, she wanted because she was be teased at school by class mates. She is in a lot of pain. The doctor told us it would be 6 weeks. And now it has been well over 6 weeks. I'm going next week for a second opinion. Her foot is still very swollen. It's really scary for her and me. This was the doctor second time doing this. I should had ask all that bedore he did rhe surgery. I had a lot going on now I'm feeling so bad as a mom. She getting frustrated having to go to school like this. And being in pain when trying to walk on it. But seeing your post has easied some of my anxiety. Thank you so much!!

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