Hello, My name is Michelle and my son was born with macrodactyly of the first and second toe on his right foot. It was a total shock when he was born and we were terrified. we also thought it would be a simple fix but after researching and seeing a doctor in NYC we realized that it is much more extensive. We also went to see a doctor at Boston Childrens Hospital and were informed of the same treatment options. I would love to speak with you more about Mollys procedure and how she did after. My husband and I are just concerned parents and want what is best for our son. especially since we have never seen anything like this before. As you said there is limited research out there so to be able to speak with someone in the same situation will I think give me peace of mind
So good to hear from you! I would love to chat about this - what's your email? Or if it's easier, you can email me at the email listed above. Look forward to hearing from you!
Hi Michelle, I just came across this blog. I too have progressive pedal macrodactyly in my right foot. I had a ray resection and tissue debulking done 25 years ago. If you have any questions, feel free to leave your email and I will contact you. Jenn
Hello ladies! My 4 year old always had a larger 3rd and 4th toe, but over time it has grown. We are trying to determine if it's best to hold off having surgery or do it sooner due to this age. How do you determine if it is static or progressive macrodactyly?
Angela, we've been where you are now with the macrodactyly. I have so many questions and so much to say that I couldn't possibly fit it into one post so I'll try to keep it short. Our son had the macrodactyly on the same two toes on the same foot. He had 2 surgeries, one at a year old then one at 18 months. The first was to amputate his middle toe and restructure his foot, the second to debulk the tissue.
We were told at that time not to have more surgeries until he went thru his growth spurts because the tissue would just come back and grow at a faster rate. I wish now that we hadn't listened to the doctors. What do your doctors say about more surgeries? When he was 15 we consulted with a surgeon who refused to touch his foot because he was scared he would hit nerves or arteries and kill the foot tissue. We decided to wait until he had finished growing. Now we're in a situation where he wants it over and done with.
He has spent all his life being told he could be or do anything he wanted, regardless of how his foot looked. He has had a lifelong dream of going into the military but it was cut short this past week.
Because of his foot, he was required to get a release from a doctor before going to MEPS to go into the Air Force. We not only got one but 4 different doctor releases stating that he could perform any physical activity required. One was even from a foot surgeon who was retired military. While at MEPS he scored top scores one every test, including everything physical. The MEPS doctor took one look at his foot and singled him out. He questioned his ability to keep his foot clean and free of infection. He's only been able to do that for 18 years! He made him bend his foot back and questioned the range when clearly his foot had the same range as the other. Then he made him squat and do a duck walk while swinging his foot outward. Barefooted on a cold floor, no stretching beforehand, all 6'2". Of course he lost his balance. He disqualified him. I've talked to countless people current and former military and none have ever been required to do a duck walk.
The worst part of it all is how it was classified. It's considered a deformity. While technically it is, in 19 years we have never used that word and have always been encouraging and supportive in anything he wanted to do. Now, in minutes, one doctors words has completely changed his whole outlook and how he perceives himself.
I can't even describe the emotions he's feeling right now. All I do know for sure is that he is very determined about having surgery to make his foot more 'pleasing' to the eye. He was even told by his recruiter that if he were to have surgery to remove the 'deformity', they would have to allow him to enlist.
Have you met anyone who has had follow up surgery as an adult and if so what was the outcome and who did it?
Thanks so much for reaching out! I'm so sorry that your son is going through all of this! What is your email? Or if you feel more comfortable, you can email me at angela@macrodactyly.net. It may be easier to communicate that way!
Hello,
ReplyDeleteMy name is Michelle and my son was born with macrodactyly of the first and second toe on his right foot. It was a total shock when he was born and we were terrified. we also thought it would be a simple fix but after researching and seeing a doctor in NYC we realized that it is much more extensive. We also went to see a doctor at Boston Childrens Hospital and were informed of the same treatment options. I would love to speak with you more about Mollys procedure and how she did after. My husband and I are just concerned parents and want what is best for our son. especially since we have never seen anything like this before. As you said there is limited research out there so to be able to speak with someone in the same situation will I think give me peace of mind
Michelle H.
Hi Michelle!
DeleteSo good to hear from you! I would love to chat about this - what's your email? Or if it's easier, you can email me at the email listed above. Look forward to hearing from you!
Angela
Hi Michelle,
DeleteI just came across this blog. I too have progressive pedal macrodactyly in my right foot. I had a ray resection and tissue debulking done 25 years ago. If you have any questions, feel free to leave your email and I will contact you. Jenn
Hello ladies! My 4 year old always had a larger 3rd and 4th toe, but over time it has grown. We are trying to determine if it's best to hold off having surgery or do it sooner due to this age. How do you determine if it is static or progressive macrodactyly?
ReplyDeleteAngela, we've been where you are now with the macrodactyly. I have so many questions and so much to say that I couldn't possibly fit it into one post so I'll try to keep it short. Our son had the macrodactyly on the same two toes on the same foot. He had 2 surgeries, one at a year old then one at 18 months. The first was to amputate his middle toe and restructure his foot, the second to debulk the tissue.
ReplyDeleteWe were told at that time not to have more surgeries until he went thru his growth spurts because the tissue would just come back and grow at a faster rate. I wish now that we hadn't listened to the doctors. What do your doctors say about more surgeries? When he was 15 we consulted with a surgeon who refused to touch his foot because he was scared he would hit nerves or arteries and kill the foot tissue. We decided to wait until he had finished growing. Now we're in a situation where he wants it over and done with.
He has spent all his life being told he could be or do anything he wanted, regardless of how his foot looked. He has had a lifelong dream of going into the military but it was cut short this past week.
Because of his foot, he was required to get a release from a doctor before going to MEPS to go into the Air Force. We not only got one but 4 different doctor releases stating that he could perform any physical activity required. One was even from a foot surgeon who was retired military. While at MEPS he scored top scores one every test, including everything physical. The MEPS doctor took one look at his foot and singled him out. He questioned his ability to keep his foot clean and free of infection. He's only been able to do that for 18 years! He made him bend his foot back and questioned the range when clearly his foot had the same range as the other. Then he made him squat and do a duck walk while swinging his foot outward. Barefooted on a cold floor, no stretching beforehand, all 6'2". Of course he lost his balance. He disqualified him. I've talked to countless people current and former military and none have ever been required to do a duck walk.
The worst part of it all is how it was classified. It's considered a deformity. While technically it is, in 19 years we have never used that word and have always been encouraging and supportive in anything he wanted to do. Now, in minutes, one doctors words has completely changed his whole outlook and how he perceives himself.
I can't even describe the emotions he's feeling right now. All I do know for sure is that he is very determined about having surgery to make his foot more 'pleasing' to the eye. He was even told by his recruiter that if he were to have surgery to remove the 'deformity', they would have to allow him to enlist.
Have you met anyone who has had follow up surgery as an adult and if so what was the outcome and who did it?
Hi Betty,
DeleteThanks so much for reaching out! I'm so sorry that your son is going through all of this! What is your email? Or if you feel more comfortable, you can email me at angela@macrodactyly.net. It may be easier to communicate that way!
Hello,
ReplyDeleteI came across your blog regarding your daughter and Macrodactlyl - My son has this and is actually pretty similar to how your daughters looked.
Would really love to chat