Connections » General Discussion

Macrodactyly Of The Foot

(16 posts)
  • Started 6 years ago by dawn seow
  • Latest reply from lmorris352

Total votes:

  1. dawn seow
    Member

    We have a 16 month old daughter who is suffering from Macrodactyly on her right foot affecting her first second and third toes. We are Chinese Malaysian. My husband and I have since visited some doctors and specialists with regard to our daughter's condition however to no avail.

    Until recently we were recomended to see a professor in Singapore who is a child orthopeadic surgeon. We have been given 2 options . One being amputation of the largest and longest (second toe) as my daughter's right foot has not only grown longer but wider. Therefore amputation of the second toe is necessary in order for them to reduce the size (width) of her foot. Besides this debulking is also necessary.

    The second option is to do debulking and also shortening of the affected bones. Which requires more surgeries in future in comparision to the first option. We are not sure which would be more effective. However, at least we found a doctor who is more aware of this condition as macrodactyly is a very rare condition.

    We hope to get the surgery done early next year as we were told that its better to do it earlier and we are not sure if that's true . I hope someone would shed some light and let us know what's the best option available for our daughter. Thank you.

    Posted 6 years ago #
  2. e79243
    Member

    I have a 6 year old daughter that has this in her foot. She had an operation at 1 year old to amputate 2nd toe and a 2nd operation a few years later to remove one digit of first big toe. Now it is spreading to third toe. Very worried what we do now.

    Posted 6 years ago #
  3. ziela
    Member

    I have a 4 year old daughter who is suffering from Macrodactyly on her 2nd and 3rd toe of her right foot. The 2 toes also fused together. She had few operations in HUSM Kubang Kerian, Kelantan from the age of 1 year to 3 year under orthopaedic and plastic surgery to debulk, shortened the bone and separate the 2 toes. But the toe still grow very fast so we had no choice but to amputate the toes. My daughter now only got 3 toes on her right foot. But she is very healthy and I'm glad. We still have to go to the hospital for follow up. I still hope miracle would happen and my daughter will get back the toes like other normal people.

    Posted 5 years ago #
  4. hievery1
    Member

    Hi I have a little boy age 5 vey interested to talk to anyone how also has child with macrodactaly.

    My little boy has had amputation of 4 toes he had 1st operation at 7 mths were they removed his 2nd, 3rd, and 4th toe, again at approx 18mths were removed his 5th toe. My son can walk run and jump etc like all the other children. He has speacial made shoes from the local hospital they mould a plaster cast around his foot and half way up his leg. His leg, ankle, and foot is triple the size of the right. He is a happy boy, but as asked for other children who also has 'bad legs' so anyone willing to get in touch pls do so

    Posted 5 years ago #
  5. danielle
    Member

    we have a four year old who has macradactaly on his left foot. the first 3 toes are involved as well as the tissue. we have not had surgery. we are waiting for his big toe to grow as large as my husbands. they want to stop growth in the first toe and amputate the second fusing the first and third toe together and then debulk the tissue. your stories help me. there are so few people with this condition thanks for sharing.

    Posted 5 years ago #
  6. Lemondrops
    Member

    Hello. I have a sister who is now 43 years old. She was diagnosed with Macrodactyly of the foot as a very young child and has had 3 surgeries (1yr, 7yr and 23yr) to reduce bulk and insert a rod fusing her large toe and foot. The condition has worsened over the years, affecting her ankle and she is currently in need of additional surgery. We are having a very difficult time locating a doctor that will treat her as an adult and in addition to the fact that she will need financial assistance. Social Security will not declare her disabled even though she can no longer stand or walk for long periods of time. and cannot continue in her profession. Can anyone suggest a referral source for doctors and financial help. We are in texas.

    Posted 5 years ago #
  7. Jill
    Member

    My daughter is 2 and has macrodactyl of her second toe (right foot)and the top digit was just removed along with fatty tissue on the balls of her feet. This was about 2 weeks ago. She seems to be doing well, but is not walking normally yet--which is to be expected. The recovery seems to be rougher on us than her b/c we don't know what to expect. Any feedback on timeframe? Are people saying that they have seen this "spread" or the toe get just as big. Would love any insights!

    Posted 5 years ago #
  8. tallymac
    Member

    My daugher was born with Macrodactyly of her left foot-first, second and third toes. We have not done any treatment. She has been to orthopedics, the Shriners' hospital in Tampa, FL and Shands Teaching Hospital, (University of Florida) in Gainesville. We were told when she was 18 mos (first visit to Shands) that surgery would not necessarily correct the problem. After reading some of the posts from those of you who opted for surgery, I am glad that we did not. She has to buy shoes that accomodate her large left foot, and are still comfortable and fit well enough to wear on her right foot. I am looking for retail merchants who allow a buy one pair, get one free, to allow her to buy fashionable, comfortable shoes at a reasonable price. She is now 21, beautiful and healthy. She is flat footed (no arch) however, she wears shoe inserts and is getting along fabulously! I thank God for her every day.

    Posted 4 years ago #
  9. cswann
    Member

    My son has Macrodactyly of his left great toe. We currently go to Shrinners Hospital in Greenville, SC. I would have to say they are the most knowledgeable on this subject. They did 5 different debulking surgery's on my son. They also did another surgery that took the growth plate out and replaced it with a pin. After about six months the tumors starting growing back again and my son asked the doctor if they could take his toe off. He is 9 almost 10. The doctors had told us from the begining this could be a last resort. He just had his toe removed monday (5/10/10). I must say they did an excellent job managing the pain and working with him. I was like other parents and didn't know what was wrong with my son. He had this from birth and my pediatrician told me it was a birth mark and until I started pushing the issue did I find out it was actually a problem. If anyone should need more information I will be glad to find out from my son's docotor. my email is cswann5880@sc.rr.com

    Posted 4 years ago #
  10. Teaches4u
    Member

    I have two little girls adopted from China who both had macrodactyly of the foot. Each had the first three toes affected with the second and third toes having syndactyly. Their fore foot had extreme overgrowth, and unfortunately both girls had symes amputations. There were no shoes that could accommodate the size of their feet, and so we opted for amputation. It is great to finally hear of others with this! My girls are 6 & 4 and are doing great!!

    Posted 4 years ago #
  11. clifton
    Member

    We have a son who is now 4 1/2 who has macrodactyly affecting his first and second toes on his right foot. He has had 3 surgeries, the first surgery was to remove the second toe because it was the largest and growing upward. This surgery was done at 9 months old. The second surgery was done at 2 years old and this was to remove the tip of the first toe at the joint to prevent the toe from getting longer. The last surgery done about 3 weeks ago was debulking of the forefoot and the space between the first and third toe when the toe was removed. It does seem like the surgery was a success as of now but we are told the foot will continue to get larger and more surgeries will be necessary, unless we try to deal with the larger foot. Not sure what else to do if anything, at least my son is very healthy and it does not seem to bother him. As he is getting older he is asking more questions and tells the doctors to make his foot look just like his "good" foot, if only that was possible.

    Posted 3 years ago #
  12. PHARMATRAD
    Member

    dear all, I am the mother of a 3-year old child with macrodactyly of the foot.
    I have opened a blog (in English) in order to gather information about this disease and share experiences.
    I would be very grateful if you could share your stories, including clinics, surgery done and results in order to be able to see what the long-term perspectives are (information is lacking to this regard)
    thanks a lot to everybody.
    Federica

    http://macrodactyly.wordpress.com/about/

    Posted 3 years ago #
  13. jennifershorer
    Member

    I am 37 years old and lived with this birth affect my whole life. When I was born they just wanted to amatate at my knee. My parents took me to la childrens orthopecdic wow was that a good idea. I have had about 15 surgeries threw out my like my first at 3 mos old and my last about 3 years ago. There is hope I am able to do way more than what doctors planned for. there is hope :) If anything this has made me a way stronger person. I played sports growing up loved soccer. My dad always said you no your own limits and Im glad he did because I lived a normal childhood besides all the surgeries. I have three children now and have had a great life so far. I go hiking 3 days a week. Guess what I have only my big toe on my right foot do to they couldnt ampate do to u need that toe for balance. Sorry my spelling is so bad I missed alot of school growing up. I just wanted to let all you parents no everything will be ok. Just let your child they are loved and god makes everyone diffrent. love to all Jen

    Posted 2 years ago #
  14. jennifershorer
    Member

    I am 37 years old and lived with this birth affect my whole life. When I was born they just wanted to amatate at my knee. My parents took me to la childrens orthopecdic wow was that a good idea. I have had about 15 surgeries threw out my like my first at 3 mos old and my last about 3 years ago. There is hope I am able to do way more than what doctors planned for. there is hope :) If anything this has made me a way stronger person. I played sports growing up loved soccer. My dad always said you no your own limits and Im glad he did because I lived a normal childhood besides all the surgeries. I have three children now and have had a great life so far. I go hiking 3 days a week. Guess what I have only my big toe on my right foot do to they couldnt ampate do to u need that toe for balance. Sorry my spelling is so bad I missed alot of school growing up. I just wanted to let all you parents no everything will be ok. Just let your child they are loved and god makes everyone diffrent. love to all Jen

    Posted 2 years ago #
  15. leebee
    Member

    Hi everyone.
    It's nice to know that we're not alone, despite this very rare condition.
    My son is 3yo and has macrodactyly of his 2nd and 3rd toes on his left foot.
    We have been seeing a specialist orthopaedic surgeon at The Royal Children's Hospital here in Melbourne, Australia. Despite the fact that this is a rare and somewhat difficult problem to treat, our surgeon does appear to be somewhat knowledgable on the condition.
    He has performed surgery here in Australia on both Australians and several overseas patients.
    Whilst we do not want to go ahead with surgery, it would appear that this is our only option. I have noticed a few posts on here stating to avoid the surgery, however my son's is not the 'static' type of Macrodactyly, rather the 'progressive'. Given this, the speed at which his toes are growing is rather obvious and we can now see on XRay that it is beginning to push his 'healthy' toes out of the way. In order to avoid these from becomming deformed we have chosen to go ahead with surgery in a few months.
    Our surgeon has had experience with both debulking and amputation. In his experience, the debulking only (without removing the blood and nerve supply to the afftected area) is often unsuccessful as the bulky tissue keeps coming back, requiring multiple surgeries.
    We are really struggling with amputation, however. It involves removing a wedge of the foot (containing the entire blood and nerve supply to the affected area) and the two toes. The foot is then bought together with one pin and existing tendon to create a narrower foot with the three remaining toes.
    Our surgeon has showed us some images of previous surgeries that he has performed, and to date these have been successful. No anticipated extra surgery (apart from removal of the pin) afterwards.
    I'm wondering whether anyone has had this style of surgery? I would love to hear from you (or anyone else who would like to keep in contact).
    Please email me on: sthcross@yahoo.com

    Posted 2 years ago #

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