My daughter

Xinqiao is a wonderful 3-year old child. She is a live wire. She never stops moving and talking😉

We were diagnosed macrodactyly of the 2nd and 3rd toes only a few days ago by an orthopedic surgeon (Dr. R.). Before that we never thought that the shape of her right foot might create any particular problem (apart from any issues concerning psychological acceptance during adolescence).

As I said before, she is such an active and charming little one that the last thing you would notice in her is her “special foot”, as we call it in our family.

I was not aware that macrodactyly can manifest both as a static and a progressive condition, and I have always considered this as an esthetic problem that we could handle when she would grow older (should she desire to do so).

Anyway, since our primary care pediatrician urged us to consultation, we ended up with this surgeon.

And now we are so frightened. He suggested that a first operation (shortening operation+epiphysiodesis) be performed in the near future (a year or so), followed by some others (debulkin?), if necessary.

My point is: is there a way to avoid surgery at all? If we are so lucky that my daughter has the static form, wouldn’t surgery incentivate further growth of the toes instead of keeping it stable? Our immune system is so complex that I fear that trying to change a presently stable situation would worsen things rather than improving them……

We have asked for a second opinion and we have scheduled a visit on May, 2nd but we are also planning to see an ostheopath, to see if he/she deems surgery necessary in terms of functional growth.

I will keep you updated.

2 Comments (+add yours?)

  1. Naweed
    May 18, 2011 @ 23:30:14

    Hi🙂

    I’m a 17 year old boy and I have been diagnosed with macrodactyly on both my feet. I haven’t any surgery done uptil this point in my life and I’m doing fine. I play football for my school and participate in many other sport. I’ve only experienced two problems in my life thus far:

    1) Finding shoes
    2) The psychological problem; it takes some serious acceptance

    After reading your post just thought I’d share that with you,

    Let me know if your daughter has received or is going to receive any surgery🙂

    Reply

  2. macrodactyly
    May 20, 2011 @ 12:29:20

    Hi,
    thank you so much for sharing your story.
    No, we haven’t had any surgery done yet and we aren’t planning to have surgery, at least for the moment. We are seeing many doctors to try to understand our situation first.
    We fear that when you begin with surgery you never come to an end, since the final result is always not satisfactory.
    So, except in the case we might determine that surgery is mandatory due to significant problems that may arise (for example in terms of walking, problems to the back), we would try to avoid it.
    You say that the only problems you are experiencing concern finding shoes and reaching a psycological acceptance of your “problem”. As parents we feel more able to face these problems rather than the possible complications/sequelae of a surgical operation.

    Anyway, I will continue to update this blog, and keep you updated on our decisions.
    Thanks a lot again.
    Wish you all the best!

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s