Before I dive into a (long) update about what we've found out and our next steps, I need to say a big thank you to everyone who gave us contacts and support over the past few months. We would not have been able to dig as deep to find experts world-wide without pretty much everyone we know reaching out to everyone they know. We've ended up seeing and corresponding with some of the very few experts in the world for dealing with this disease. So a big thanks to you all for all of the time and love you've put into this.
In April we went to a specialty clinic in Aschau which is about an hour away from us. Apparently they've seen macrodactyly there relatively frequently, but the doctor we saw there hadn't seen it or treated it herself. Her only real recommendation was to sit back and wait and see how the toes developed and to hold off on surgery as long as it made sense. We weren't very happy with her bedside manner and it did feel like there was a language barrier. So we don't plan to go back.
Since the previous blog on this subject, we feel a lot more informed on options and also with the fact that there is no perfect course of treatment for Elise, and really no "best" course, but a number of courses which are good options, each with their own pluses and minuses. So whatever course we end up choosing, it will be the best for us. As for Elise herself and her two big toes, they continue to get bigger but they're not holding her back. And what we feared/assumed would be two significantly ingrown toenails have turned out to be just fine, not ingrown and relatively easily trimmable.
In May we were able to collect couple of e-mail opinions from two experts in the US: Dr. King in Chicago and Dr. Kasser in Boston. Both basically recommended ray resection of the second toe and then at some later point a procedure called epiphysiodesis on the big toe, which basically destroys the growth plates on the bones. The second procedure would be timed to happen whenever her big toe is the length of Nicole's. We ended up having a couple of quick phone conversations with Dr. King which were very informative and we were incredibly happy that he was actually willing to have a real conversation with us and answer all of our questions.
When we traveled to the States in June we were able to get an appointment with Dr. King and spent about three hours in his office. Ok, about an hour of that was spent waiting for X-rays to be taken and their results to be delivered. From the X-rays we could see that the bones in the two affected toes were a bit larger than the other toes and than the corresponding toes on the other foot. They were also significantly separated from each other by tissue. There's definitely a lot of extra tissue around there. Dr. King walked us through the options and drew us pictures of the procedures and we walked out of his office feeling much more knowledgable than when we walked in. Before I forget, a couple of other random details. Even with a ray resection and destroying the growth plates, the tissue in that part of her foot will probably continue to grow, but the rate of growth will probably slow since there's some kind of symbiotic effect, where if the bone isn't growing, the tissue won't grow as much. Also, her toes continue to bend upwards significantly, and Dr. King mentioned that it should be relatively simple to "loosen" the tendons connected to her big toe to let it rest in a more normal position. Oh, and one more thing, that even if she had zero toes she would be able to walk fine since you only really depend on three points on your foot: the heel and pads at the base of your foot by the big and little toe.
After getting back to Munich we got contact information for an expert in Hamburg, Dr. Habernicht. Nicole spoke to him on the phone and we were happy to hear that he's treated macrodactyly often. His recommendation for treatment was a bit different though, saying that he would want to use a single surgery to perform both a ray resection and epiphysiodesis, stopping the bone growth before the toe was adult-sized sometime next summer when Elise is 1.5. His reasoning was that the tissue will continue to grow to some degree, and it shouldn't matter much if the big toe ends up a bit smaller on that foot than the other. He wants to wait until next summer to do this (after she's walking). Seems that opinion is divided on whether to do the ray resection before or after she walks, with Dr. King essentially saying it didn't matter much, she'd walk just fine either way and the recovery would be short enough and in a soft cast so it shouldn't disturb her getting around much.
It was also recommended to us to contact Dr. Weber who is based in Zurich. He agreed with the ray resection but didn't want to destroy the growth plates in the big toe yet, preferring instead to remove a nerve in that toe which in his opinion should slow the rate of growth. We need to follow up with him more and get other doctors' opinions about the nerve option, but that basically brings us to where we are today. We have an appointment to meet with Dr. Weber next week in Zurich.
A few people have contacted us from around the world from the last blog, so part of our intent with this post is to give a lot of details and names of doctors since there's just not a ton of this information available online. And if you've stumbled across this blog post with a child or even yourself in a similar situation, please comment!
A few people have contacted us from around the world from the last blog, so part of our intent with this post is to give a lot of details and names of doctors since there's just not a ton of this information available online. And if you've stumbled across this blog post with a child or even yourself in a similar situation, please comment!
