Macrodactyly Update - 1 year post op update - Surgery #3

Elise (age 11) recently had her 1 year post op follow up from her 3rd surgery to address her macrodactyly condition on her right foot.  The reasons for her surgery last December were:

1) Destroy the growth plate in her big toe as a preventative measure to limit more difficult complications down the road.  The growth plate was destroyed in a previous surgery but it grew back!

2) Remove (debulk) soft tissue from bottom of her foot to hopefully fit into more shoe styles.

3) Change the angle of her big toe to decrease the overall height of her foot by cutting a wedge of the bone and inserting a couple of small pins.

Before Surgery - December 2021

After Surgery December 2022

Results

The way her special foot looks now is most likely how it will stay in terms of soft tissue overgrowth.  With her growth plates destroyed and as much soft tissue as possible removed, it's just not really possible to grow more.  That's good news but also a bit sad since we are at a point where really can't do anything more to help her foot...if that ends up being true.  Her shoe wear options didn't really improve like we hoped from her surgery so extra wide New Balance continues to be our best friend.  Once her foot stops growing, custom made shoes is what we'll explore.

Sensation to a portion of her foot did not return like we hoped; It probably won't at this point ever again.  That's not good news.  It's not as dangerous as it is more annoying looking ahead.  She wouldn't feel temperature sensation or stepping on something sharp.

Elise's leg length difference is the next issue we will consider for potential future surgery.    The good news is that her leg length difference has stayed consistent at 2.2 cm over the last couple of years so much more safe to say that it will stay that way.  Next step is determining whether to undergo leg length correction surgery.  2cm is when doctors start recommending it and she's right at that point.  We'll do an x-ray of her hand in 6 months to get a better estimate of her future growth to determine timing of the surgery if we do it.  She could wear a lift in her shoe the rest of her life too.  We'll definitely leave it up to Elise on this one.  We want to avoid potential hip issues down the road which could be quite painful.  

Overall, it's a mixture of good news and sad news.  We are incredibly grateful for not only the chief resident from Elise's 2nd surgery coincidentally relocating to Portland from Boston but also the simple fact that we like her, respect her, and appreciate her bedside manner.

Elise is a very sensitive 11 year old with big emotions but when it comes to her condition, she is incredibly resilient and strong.  She's had years of practice now on how to react to stares, mean comments, and questions.  She has quite a sense of humor at times about her foot whether it's making up jokes ("Why did a person blow their nose in their foot?  Because it has a lot of tissue in it.") or answering a kid asking about her toe with "lost it in a magic trick."