About

This blog is about macrodactyly, a rare condition affecting the feet and the hands.

It is still under costruction, but if you know information that could be helpful, please, contact us:

macrodactyly@campingmargherita.com

Thanks a lot!

Words in italics are explained in the K.I.S.S. Section (still under construction and continuosly being updated)

A few hints about the condition

Macro means larger than what is considered normal; pedal macrodactyly is a condition where the toe on a foot is growing more quickly than the other normally growing toes. It is a rare congenital disease, which means that you are born with it, although it doesn’t seem to run in families. Because the toe is larger than the others, it has extra fibrous fatty tissue on the bottom (the plantar part of the toe, causing it to curl upwards, the dorsal or top.)

Macrodactyly falls into one of two types: static or progressive, the most common type. Patients with static macrodactyly have larger toes (or toe) when they are born. It then continues to grow proportionally to the other toes. The other type, progressive, the toe grows faster than it should, given the growth pattern of the child. The condition seems to affect slightly more boys than girls, and it can occur on one foot only, on both feet, and it can be symmetrical or asymmetrical. Macrodacytly isn’t necessarily associated with any other type of deformity, although it can be found in people with some types of syndromes, such as Proteus syndrome, Banayan-Riley-Ruvalcabe, Maffuccin, Ollier’s disease, and Milroy’s disease.

Kelikian described a rarer type, which he named hyperostic. In that type, para-articular calcifications develop, which limit significantly the ability of the affected articulations, and its appearance seems to start later and it does not stop with the closing of the epiphyses.

The index digit is affected more frequently and, in decreasing order of frequency, the middle, the thumb, the fourth and the fifth digits follow. More than one digit are affected 2-3 times more frequently than one digit alone.

True macrodactyly must be distinguished from other forms of enlarged digits that are a result of tumours, inflammation and other specific tissue dysplasias such as hemangiomas, arterovenous shunts, congenital lymphedema, lipomas etc.
The confirmation of macrodactyly, obviously, is made radiographically.

Although the cause of macrocactyly isn’t known, there are theories, which include one hypothesis of a defect in a cell that causes certain areas of the body to become supersensitive to growth. Another theory is that it may be caused by an interaction of genetic and environmental factors. There may be hemangiomas, which are benign (noncancerous) tumors made of a mass of blood vessels. These may also cause enlargement of the toes. Another cause could be damage in the nerves, causing rapid overgrowth of the area.

When the affected toes of children are examined, it is seen that the subcutaneous fat, the fat just below the skin, looks like adult fat, not a child’s. As well, all the elements of the toe are larger (the tendons, nerves, blood vessels, fat, nails, skin and the bones in the toe. The exception is the bone in the foot that goes to the affected toe is not larger than normal. The skin on the affected toe is thicker than normal and the toe feels rubbery and soft.

Treatment for the disorder depends on several issues, particularly, if the toe or toes are causing pain or disability.

If surgery needs to be done, the surgeon could destroy the growth part of the bone, along with removing as much as the excess tissue as is possible. This part, however, called defatting, is done in a two-step process. The first step involves reducing the thickness on the convex side of the toe by 10 to 20 percent. The second step involves doing the same to the other side, and shortening the bone and removing excess skin.

For the repairing of the length, shortening osteotomies are recommended. Several shortening methods have been descibed. Barsky and Tsuge recommend the removal of a large portion of bone on both sides of the distal phalango-phalangeal articulation and arthrodesis.

In children, in order to arrest further enlargement of the digit, epiphysiodesis of all of the epiphyses of the affected digit is recommended. This operation, however, does not restrain the enlargement in width of the digit. Keeping in mind that macrodactyly is caused by an abnormality of the nerve, operations on the digital nerves are recommended, such as the stripping of the nerves from their branches or the removal of a part of the nerve and end-to-end anastomosis.

Amputation could be considered, but this is not common and is usually only used as a last resort. As well, amputations of the smaller toes do not seem to have as big an effect on the foot as with the larger toes, so this is also taken into consideration.

Management is generally difficult. Probably multiple operations would be required, and the ultimate outcome would be potentially not satisfactory. Both the surgeon and the patient should know this and should be prepared.

61 Comments (+add yours?)

  1. Loan Nguyen
    Jun 02, 2011 @ 09:45:36

    My daughter is 13 months old. She has a macrodactyly toe on left. I live in Vietnam. It seems that this is a very rare in Vietnam because doctors that had examined my daughter’s toe has never treated this case in Vietnam. A senior doctor advised that my daughter should have a surgery to cut short macrodactyly toe and remove hypertrophy of adipose tissue from this month of age. Besides, the doctor will cut off a blood vessel that feeds macrodactyly toes to prevent further overgrowth of it.
    I’m very sad and worried, I don’t know what I should do.
    I wondered, why my baby is macrodactyly on her toe. If I had the second baby whether she (he) was macrodactyly or not.
    I’m always thinking about the cause of macrodactyly for my child as follows:
    I had some chemical contamination in the laboratory of the school when I was 17 years old.
    I have used herbs to make my menstrual cycle better.
    I ate food that is infected stimulated growth drug on during pregnancy.
    I hope you will share your experience to me.
    Loan Nguyen.

    Reply

    • macrodactyly
      Jun 02, 2011 @ 12:10:16

      dear Loan,
      I feel very near to you in this moment. It is always very difficult to make decisions when the health and wellbeing of our little ones is at stake. We haven’t decided what to do yet, but I give you only one suggestion: see as many doctors as you can. As parents we should aim at finding a doctor we completely trust and who takes the situation of our children to heart. Otherwise it would be impossible to feel relaxed and peaceful with our choice. Every doctor has his/her own view. According to some surgery should be done as soon as possible, according to others it should be delayed as much as possible. As you can see these two views are diametrically opposed. I must confess that we are much more in line with the latter. We fear so much surgery and most of all we fear to “medicalise” our daughter’s condition. She is now the most light-hearted and lively little person I have ever known. Surgery is trying both physically and psychologically and results are often disappointing, especially if the aim is to achieve a satisfying aesthetic result. Most probably we are going to follow a functional approach and to delay surgery until the onset of serious problems with walking and shoe-fitting.
      However, everything depends on how much your daughter’s life is affected by the condition. Were you able to determine whether the condition is static or progressive in your case?
      One more thing: the condition is of course rare, but there are for sure other parents in Vietnam who are experiencing the same situation. I hope this blog can help you find them.
      Good luck for the moment! I hope you’ll continue to write and keep me updated on your child’s improvement.

      Reply

    • macrodactyly
      Jun 02, 2011 @ 12:16:06

      Sorry, I forgot one last thing: please, do not feel guilty for your child’s condition. It is nonsense now to question why all this happened. We should now focus on doing our best to ensure that our children live as much as possible a happy and untroubled life.

      Reply

  2. Emily
    Jun 02, 2011 @ 22:20:44

    Hi! My name is Emily and I am a 20yr old with Macrodactyly in my left foot. I haven’t had much time to read through all the posts, but I still felt as though I should share a little bit. I have the condition in mostly in my left foot although my entire left leg is visibly different from my right.

    At six months old, I had the two largest toes on my left foot amputated in order to make my foot more functional once I started walking. At five, I had a debulking surgery and at twelve, I had another surgery where they removed my growth plates, shaved down bones, and removed more soft tissue. While I look different, I have a fully functional foot. Although I can’t wear high heels or Converse, I do get to wear sheep skin slippers made specially for me.

    In all honesty, I’m mad and I always have been but there isn’t anyone to blame and I have never blamed my parents or any other family members because I understand this is a completely random condition. I do experience some pain and discomfort in my joints because of the excess tissue but at the end of the day, I’m healthy and happy.

    I can’t imagine how parents feel about watching their children experience this, no matter how old they are. I would love to talk to you or any followers, or even your kids assuming they’re old enough because I think we can all relate. Hope all is well.

    Reply

  3. Loan Nguyen
    Jun 07, 2011 @ 07:15:58

    Dear Macrodactyly and Emily,
    Thanks so much for sharing your experience of macrodactyly with me. I’m very grateful to you for your encouragement and solace to me.
    I intend to have my daughter’s toe made orthopedic surgery when she will be 3 years old.
    I will usually write about my child’s situation on this blog.
    Best wishes to you.

    Reply

  4. Jen
    Jun 16, 2011 @ 01:05:15

    Hi All,
    I am 36 and have macrodctyly of the right foot. Back when I was a child they tried a few surgeries but my toes continued to grow. They also webbed my toes together as they weren’t sure what to do. When I was 15 I had a ray resection and some debulking done of the adipose tissue on the ball of my foot. It has now been 21 years since surgery and for the most part things have gone well. I have had a few episodes of phantom pain that have driven me nearly insane! I have developed osteoarthritis in the joints that were operated on and I have recently developed some newer problems but overall I have been able to wear most kinds of shoes and be very active and live a very normal life. All the best to you all as you go on this journey, Jen

    Reply

  5. Bri
    Oct 03, 2011 @ 18:59:58

    Hey all. It has taken me 21 years to gather enough courage to research and write this. I have 2 brothers and a sister and as a kid my envy toward them as a kid was intense. I always asked myself why had it not happened to them it’s just so unfair. I blamed my mother all the time and it kills me that I would put that on her. I’ve had about 6 surgeries for de-bulking, shortening of the bone in my big toe, amputations, and half of my toe nail removed in my big toe because I had severe in-grown toe nails. It is effected in my right foot i have a normal foot on one half and my first toe is larger than my left big toe and I had the 2nd and 3rd toes amputated at a young age so it would not spread. It didn’t spread and I’m so thankful for that. Although the bulk is still there I’m blessed. It kills me to see flip flops, cute peep toe shoes, and those who swim so freely and myself standing off to the side wearing one sock in the pool and blaming it on “past surgeries to correct a broken bone when I was three.” I am proud to have played varsity sports such as soccer, basketball, softball, and for a short while lacrosse. I even did Irish step and a very short lived year of ballet. My balance wasn’t as great during basketball but I was tall and ran like nothing abnormal was in my sneakers. I even worked as a floor model for Abercrombie and Fitch, (I wore converse sneakers that were allowed for the dress code! lucky me!) Sure, shoe shopping sucks but I manage to find cute shoes eventually, winter is great boots and no one can wear flip flops. I’ve ALWAYS asked for cosmetic surgeries for two fake toes maybe lipo-suction for the fat maybe shaping for the big toe to make it look normal, but I’m not positive that’s even possible. What I’m trying to stress is that yes, it’s bad and so unfair. However it’s not on my face nor my hands or the rest of my body. I’m a tall, beautiful, athletic, strong willed woman. Some people don’t even have that! Shoes and socks can hide this and everyone who makes fun of it can shove it, I’ve had many people I thought I could trust know about my most sacred secret. And best believe when parting ways or getting in fights i was called “sasquatch” “the six toed girl (they’ve cut me short I HAVE 8!)”, alien or “retarded” foot, and lastly the “freak foot” These people have never called me fat or ugly, which always means that I am not any of those so they must dig for horrible insults to bring me down and guess what? I’m still alive, intelligent, athletic, and a damn good friend to have. Psychologically, this has effected me emotionally all my life even times to this very day. For anyone out there reading this feel blessed that God put you on this earth to bear what others could not handle as well as we all have.

    Reply

    • Karyn
      Oct 08, 2011 @ 22:55:50

      Hi, I have macrodactyly of the hand which effects my middle finger and know exactly how you feel. It’s something I don’t thnk I will ever come to terms with and will do anything to keep it a secret. As a child I never got any treatment I remember regularly going to the hospital but nothing was ever done. I am struggling day to day as now its quite painful and am finding it really hard to fully bend my finger so making it more difficult to hide. I can’t even bring myself to go to the doctor as I am to ashamed. Yeh I am gratefull to be otherwise healthy, have a wonderful family and a really good life but like you and your flip flops I would love to get my nails done and not feel I want to curl up and die when someone wants to shake hands. But hey theres plenty people in a worse position and one day maybe I will accept me for who I am or find the courage to seek medical help, who knows there maybe be someone out there who could give me a lovelly new finger ( I can live in hope ). Your post really helped me never had the chance to speak to anyone who would really understand what it feel like. Thank You for giving me this oppertunity.

      Reply

      • Sam
        Oct 23, 2011 @ 23:42:15

        Hi Karyn,
        My 6yr old son has macrodactyly which affects 6 of his fingers (the middle finger of his right hand is severely affected) as well as the back of his hands. We live in the Caribbean and are currently raising funds for his surgery. His surgery will be performed at Badia Hand to Shoulder Centre in Doral Miami, Florida. Please check them out, the staff are all very helpful and sweet. I am certain that they can help you.

      • Brittanaca
        Dec 22, 2011 @ 17:35:06

        Hello Karyn,

        I do not have macrodactyly, but I am a mother of a 4 year old girl who has it on her left foot and it affects her big toe and bottom of her foot. I just want to say to you do not be ashamed at all, especially about going to the doctor about it, because they are here to help. We live in Texas and after going from doctor to doctor, my husband and I have found a doctor in Dallas who will be performing my daughter’s first surgery next month. The doctor made us feel so welcomed, he had a smile on his face the entire time, and he made my daughter feel like there was nothing wrong with her foot at all, He told her that he was just here to make it even more perfect. That touched my heart and made me sooo happy for her. I am excited about her surgery because as of now, she is not able to wear a shoe, and I am excited about the doctor we found! I encourage you to go to the doctor and look for a doctor who is familiar with the disorder. Believe me, you have nothing to be ashamed of because doctors have seen it all : ) You stay encouraged and hopeful. I will keep you in my prayers and pray that you do find a doctor that can help. Take care!

      • Mike
        Aug 15, 2012 @ 16:58:57

        Karyn,

        I totally understand your situation. I have MD on my left hand. My ring finger was removed as an infant and I went through about a half dozen debulking surgeries as a child. Growing up with MD was difficult, but you have to remember that adults are generally accepting and understanding. You and I may still have axiety because of the way kids would react to our MD when we were young, but I have found that when most people notice my MD they are just geniunely curious. It can be annoying to have to explain your MD, but try not to associate it with your negitive experiences from your youth.

        As far as seeking medical treatment you should not be ashamed of anything because you have done nothing wrong. I remember my hand surgen’s office from when I was probably 5 years old. He had hundreds of plaster molds from the children’s hands he had worked on. I remember feeling like I was in a judge free safe zone as soon as I walked through those doors. That feeling made the entire process very tolerable and it kept my axiety low.

        Doctors that perform MD procedures are not your typical “plastic surgen”. They are highly skilled at what they do because of the complexity of the procedures they perform, and likewise they are very understanding to your needs and emotions.

      • Bri
        Aug 17, 2013 @ 03:50:12

        Karyn,
        Sorry it’s taken me a bit to reply. I’m now 23 and nothing’s changed with me as well. Your posts like all the others brought tears to my eyes. I’m most positive you are a beautiful young woman and it’s so tough I understand your pain and insecurity. I wish the world were not so judgmental and we could walk into a nail salon to get manis & pedis =) I was at a bar this summer and some girls from high school that I had gotten into a fight with (how immature) back then one of them I’d known since childhood told one of them.. A guy I knew walked up to me and said hey I heard you have 9 toes.. Now let me tell you my face drained of color, I didn’t know if I should be angry, mortified, embarrassed, ashamed, or just want to curl up and die. At 23 this happened, because people are mean and as I’ve said they couldn’t call me ugly or fat because I’m not so they go for the thing you cannot control because they’re jealous and have nothing else. Parents, don’t be afraid, yes your child will bare more than other children but they’re healthy, beautiful, and alive. They’ll be devastated, angry, and want to cry and let them it’s natural I did it and still do. But, it’s not your fault and it isn’t theirs. I played sports, had tons of friends, did Irish step, went to proms, went to parties, I’m a normal person minus my small minor foot which I can hide but sometimes I’d love to lay on the beach with my friends who don’t know about my foot many don’t because of girls I thought were friends so trust is an issue. I’d love to wear sandals and peep toes and feel normal. But I can’t and I must continue and you’ll all find this and eventually it won’t seem so bad. Embrace your children they’ll need you my mother was my rock at every surgery ill be having another this year.

        Good luck & stay positive

    • chezera
      May 02, 2014 @ 08:01:57

      That alright bri.sounds like the spirit of champions.I was bullied for other reasons growing up…sounds like u are someone id be proud to know……

      Reply

    • chezera
      May 02, 2014 @ 08:22:09

      You sound like someone I wanna meet.u are awesome.my.name is chezera

      Reply

  6. Becca
    Nov 29, 2011 @ 13:39:22

    Hi,

    I am a mother of a little boy who is now 3 years old. We are from the UK, Scotland to be more specific and the consultant we see at the children’s hospital has only treated one other case of macrodactyly in his time.

    My son had the second toe removed from his left foot a month after his first birthday. This was the main toe affected however since then his first toe has been badly affected. It has grown 2 sizes larger than his other foot which doesn’t have the problem. He gets custom made shoes at the moment so it’s an appointment every 6 weeks for that and he see’s the surgeon every 6 months. They are reluctant to do anything at the moment and would rather wait until he’s a little older. At the last appointment they were talking about shortening and debulking but nothing is set in stone at the moment.

    I hope that there won’t be many more surgeries as it was a traumatic event the first time. I am just glad that this is the only thing that seems to be wrong with him and the original problems they suspected at birth and a few months old they turned out to be nothing.

    It’s great to hear from other people going through the same thing, it’s a lonely time knowing your child has this condition and there is no-one to talk to about the fears or the what if’s.

    Reply

  7. Cecily Van LIew
    Dec 12, 2011 @ 04:37:10

    My son was born wiuth macrodactyly in his left foot. His middle toe was affected and at 10 months old the first doctor amputated his toe down to the first digit in order for him to wear shoes. It continued to bother him and we were referred to Shriners Hospital and at 3 years old he had his entire middle meditarsil amputated and a debulking procedure done on the fatty tissue on the underside of his foot. He is now 16 and has competed in many athletic events and it hasn’t bothered him unless he runs for great distances. He is embarrassed by his unusual foot. I do recommend Shriners to anyone with this problem. Shriners was wonderful and has been very helpful. Shriners is also free of cost.

    Reply

  8. Brittanaca
    Dec 22, 2011 @ 18:14:22

    Hello Everyone!

    My daughter is 4 years old and she has macrodactyly in her left foot. It affects her big toe (which is bigger than mine) and the bottom of her foot. I noticed the difference in her toe soon after she was born, and the doctors said she will grow into it. Well, after she started growing, her toe was growing and getting bigger. I knew there was something wrong, especially when it would turn purple and swell. By the time she was 3, she was not able to wear a shoe and now her foot is starting to lean inward. Over the years, we saw different doctors who took several x-rays, but they did not do anything else after that. Thankfully, we found a pediatric plastic surgeon at the Children’s Medical Center in Dallas who is very familiar with the disorder and has scheduled her first surgery in January. He plans to do a series of debulking and does not want to amputate, because thankfully, only one digit is affected. My only concern is that once the tissue is removed, is it possible for it to spread to her other toes? He says that of course, he can’t make it look exactly like the other foot, but he will definitely make sure she can wear shoes. I am looking foward to that, and years of her being able to run without tripping and play sports. She wants to do ballet, so I truly believe her doctor will help her to accomplish that. I was told that macrodactyly is very rare, but the more I research, the more I find that there are a lot of other families who are dealing with this disorder. All of your stories have helped me, and to you older people who have been living with the disorder for years, you have made me feel good in knowing that my daughter will be okay as she grows older and she can make it though this. Thank you all and stay encouraged! God bless : )

    Reply

  9. Sam
    Mar 08, 2012 @ 01:09:29

    Hi Everyone, my son is now 7yrs old. He had his first surgery done on his middle finger, right hand. It was done at the centre I mentioned previously. It was very successful, they debulked on one side and shortened the digit. He is doing really well. All the medical staff treated him with such love and made sure that he was calm. We are to return soon for further debulking. May we all be blessed with strength and health. Take care y’all!!

    Reply

  10. Emily
    Mar 09, 2012 @ 00:02:13

    Hey guys, Emily here again! I really enjoy reading all of the posts and seeing the people effected as well as parents of children talking about this. I’m 21 now, and nothing has changed. I guess I’ve come to a point where based on limited blood flow, surgeries have become more dangerous so I can either risk that or amputate which seems completely pointless seeing as while it’s enlarged and looks freaky to some people, my foot is completely functional.

    I would also like to ask, has anyone else noticed the amount of posts on here of people or children who have to defect in their left foots? Mine affects my left leg and mainly my foot. I visit the doctor maybe once a year at this point but maybe this is something someone could ask their current doctor and report back? Just wondering. Hope everyone is doing great!

    Reply

    • macrodactyly
      Mar 09, 2012 @ 17:55:26

      dear Emily, when we visit our doctor in September I will surely ask. Anyway, my daughter has her right foot affected. I don’t know if there are any statistics about frequency of affected side of the body. Maybe it’s just a chance that the story you heard about all concern the left side.

      Reply

  11. Emily
    Mar 10, 2012 @ 02:07:14

    A lot of the cases I’ve heard of/seen involve the left side and I was just interested to know if that’s just a coincidence or not. Please keep me posted thanks!

    Reply

  12. Alana Campana
    Mar 12, 2012 @ 16:09:48

    Hi – so glad to have found this site. My daughter who is now 11 has macrodactyly of her right foot – her fourth and fifth toes and the bottom of her foot. She underwent 2 debulking surgeries when she was 3 and 4 which may have slowed the growth somewhat. That surgery was done by a plastic surgeon who referred us to a wonderful podiatrist because he felt there was nothing further he could do for her other than amputation. The podiatrist does have some experience with macrodactyly. He has us on a course of just watching her growth for now and when her foot stops growing, perform a debulking surgery and possibly shortening of the toes. This condition has not caused her any pain in her daily life and has not stopped her from running, playing sports and gymnastics. It does present a problem in buying shoes – we usually have to buy two different sizes. Thank God for Crocs – she lived in them for a few years. She is a very active, outgoing beautiful girl, although she is very sensitive about her condition and would like to be like her friends and wear sandals and cute shoes without being embarrassed about her foot. I pray every day that her condition can be treated with a postivie outcome.

    Reply

  13. Noelle
    Apr 29, 2012 @ 00:32:28

    Hi all, my name is Noelle and I have a 9 month old daughter who has macrodactyly affecting her first 3 toes of her left foot. We have our first consult with an orthopedic surgeon next week. It saddens me to read some of these stories of young girls/women who have gone through ridicule and feeling of low self confidence. This is my biggest struggle, knowing that my daughter, too, will deal with these very same issues. It is going to be my biggest role life to help this little girl be the most self confident, free willed person she can be. I don’t know what steps we will be taking yet but I do know they will be sooner than later. Her two middle toes are so progressed and seem to be still progressing at a faster rate than the rest of her little body. They also have sydactyly (connected) and are pointing straight up. Her pad also fills the palm of my hand, there is no fitting any type of shoe on there. She doesn’t seem to like to bare weight on it either.
    Hoping for some good options at her appointment, and to have Dr. With prior macrodactyly experience!

    Reply

    • macrodactyly
      Apr 29, 2012 @ 18:00:07

      dear Noelle,
      thanks a lot for sharing your story.
      Do not feel discouraged!
      I would like to tell you one thing. I am adopting another child from China from the waiting children programme and in the last few weeks I have been searching the web concerning various conditions that may affect our child in order to say “yes”, “no” or “perhaps” for being referred with a child with such “special needs”. I let you imagine how many such children have conditions whose very name is able to frighten prospective parents.
      At least our little ones do not have a life-threatening disease. I know it’s not easy to deal with macrodactyly (otherwise I wouldn’t have opened this blog), especially with its psychological effects, but at least we can affirm that our children, are apart from this, completely healthy.
      Keep us posted on the outcome of your appointment.

      Reply

  14. Priscilla
    May 12, 2012 @ 22:08:02

    Hello Everyone,

    I enjoyed reading all of your different cases. Some more severe than other’s but one thing we all have in common is the love we have for our children. My son was also born with Macrodactyly on his left foot. His right foot was also affected but not as much as his left. On his left foot he has no toe nails and the 3 middle toes are short, webbeb, fused and deformed. The human body is born with 2 bones in all toes, My son was born with one bone in all toes. I also found it strange that not only is this condition rare but I have noticed that is has been most effected on the left side. My son is now 3 years old and for the past 2 years I have been doing non stop research, speaking to many doctors here in my city (Santa Clara, CA) and also to other doctors throughout California. I also currently gathered more information that I would love to share with you all. I have built my own website with current information from specialist from all around the world (including location and reviews), information i gathered on the condition and pictures and stories from other parents who also have children suffering from this condition. You will also have the option to share your story with pictures as well. The information I have gathered is for minor and sever conditions. I will also be sharing my own personal experience, or more like adventure I have had with my little boy. I can honestly say I understand where each and every one of you are coming from. We are not ashamed of our children’s condition but afraid to embrace it. I have spent a lot of time on the research I have gathered because I, at one point was as confused as most of you, I still am but as the days go by i learn more and more everyday and I am extremely excited to share it all with each and every one of you. I hope the outcome from it is to help each other with information and for support.
    As soon as my website is all set I will be posting the name of my domain on here and on other blogs as well, I look forward to sharing this with you all.

    In our eyes our children are perfect and that is one thing we must show our children to see as they grow.
    -Priscilla J. Marquez

    (you’re welcome to email me regards to the approximated date priscillajmarquez@yahoo.com)

    Reply

  15. Amber
    Sep 24, 2012 @ 16:21:07

    Hi Everyone,
    My name is Amber and I was born with static Macrodactyly, to my left middle finger, almost 50 years ago. When I was born with this, the doctors at the hospital had to go to the medical library to find out what it actually was that I had. The first thing done was all the veins were stripped to try to stop the growth, but that did not work so at 6 months old they decided to amputate my middle finger. The disease had also left my left ring finger longer, a littler larger(not too much) and bent on the end. At 12 years old I would have my 2nd or 3rd surgery (can’t remember) to remove scar tissue built up in the palm of my hand and have my ring finger broken and set with pins to try and straighten it. The surgery worked, but now my ring finger was extremely long, so at 19 years of age I had another surgery to remove my upper joint and calcium shaved from the pointer and ring fingers. During this surgery I almost lost both fingers so I was advised by the surgeon never to have the hand operated on again. Agin the surgery worked. My finger is shorter but at my age calcium is now building up on both the ring and pointer finger joints.

    I consider myself blessed due to the fact that my parents never let this be an obstacle for me. I went through 16 years of school and not one person ever made a rude comment about my hand. I was a cheerleader in school, on many social committees, Secretary of my Senior Class, Homecoming Court and a sorority member in college, so my “little” flaw did not hold me back. I even became very good in math. If you embrace it from the beginning it is much easier. I always tell everyone that God only cracks a few perfect eggs and I consider myself one of them!!!! By the way, I wear my wedding ring on my right hand and my husband of 21 years and my two boys, ages 12 and 19, are more than happy to hold my LEFT hand!!!

    Thanks for letting me share.

    Reply

  16. Liz Broughton
    Sep 26, 2012 @ 16:50:00

    My son was born with macro in his right foot 2nd and 3rd digits. They were also fused together. We went to more doctors than I could count to figure out what is was. We finally saw a podiatrist who told us he had only seen this condition In text books at school. He researched and found a dr. In Florida at sacred heart hospital to contact. After sending him pictures of my sons foot He confirmed diagnosis and told us he could help. We traveled from Dallas to Florida when he was 15 months old. My son had the two toes amputated and they checked the bones in his foot to make sure they were not affected. It has been a Long road, but he is 10 now and although he plays basketball and lacrosse it has started building up fatty tissue on the bottom and may start have affecting his third toe. We are now debating taking him to Scottish rite but my son is scared and says he does not want to go. I just wanted to share my story and not sure where this journey is going to lead us, but have decided that my son is old enough to be in the drivers seat and lead us to how he wants to go.
    > Hope this finds you all well, it’s amazing to me how many others have been affected by this disease.
    > Take care
    > Liz Broughton
    > Dallas, Texas
    > Lizmbroughton@yahoo.com

    Reply

  17. Liz Broughton
    Sep 26, 2012 @ 16:55:38

    I am wondering if anyone is interested in face time talking. I would live my son to talk to little ones and maybe help them with any questions as he is soo good with little kids. It would be great for him too.
    If so, please email me
    Lizmbroughton@yahoo.com
    Thanks
    Liz

    Reply

    • macrodactyly
      Dec 05, 2012 @ 09:02:01

      Dear Liz, sorry for replying so late but we were very busy (also because we are adopting a second child from China – She has missing phalanxes in her right hand). Xinqiao is too young and she can’t speak English. Otherwise I would have been very happy to have her talk to your son through skype. Maybe someone else can help. How’s he doing now?

      Reply

  18. Liz Broughton
    Sep 27, 2012 @ 00:01:00

    Also he has a foot disease on his right foot so he only has 3 toes on that foot

    Reply

  19. Karyn
    Jan 05, 2013 @ 23:18:59

    Hi
    It’s been a while but would just like to say thanks to all who replied really appreciate it, Mike first time I have found someone that really understands how I feel. Well really struggling right now so think it’s about time to find a doctor that maybe can help but don’t know where to start. I live in Scotland but anywhere in UK if anyone has suggestions/ideas.

    Thanks x

    Reply

  20. Becca
    Jan 05, 2013 @ 23:34:38

    Hi Karyn,

    I too am in Scotland, my son is under the care of Dr Duncan at Yorkhill Children’s Hospital in Glasgow, he is heading for his second surgery on the 15th to have a reduction in his toe (they can’t amputate as he woudn’t be able to walk so they are cutting the toe back to the joint to prevent that) at the same time he will be getting the debulking procedure through the open wound to prevent having to cut the sole of the foot. When we first saw Dr Duncan he mentioned that he had had a case that was slightly similar so he has at least a little knowledge. My only bug bear has been that they refused to do surgery any earlier which has caused me no end of problems with shoes, especially so after the custom made shoes were rubbing his feet and causing him blisters and problems so we had to stop doing that and resort to finding whatever type of shoes we could.

    I hope you find a doctor who can help you, I remember being terribly scared when the consultant at our local hospital seen him when he was just a few weeks old and basically said we have no idea what this is, google is giving us no answers so we’ll refer you to the children’s hospital but don’t be too optimistic they will know what the problem is.

    Reply

  21. MacrodactylyMan
    Feb 05, 2013 @ 03:28:47

    i was born with this … disability i am now twenty and this past september had my second operation partial amputation .. and now suffer from phantom limp symdrome (Nerve pain,itching,burning, and stabbing feeling .. did i mention severe muscle spasms?) Currently fighting for disability in california where they believe i can work a 6-8 hour job with breaks .. i cant even fit inside a shoe with out having to take it off every 30mins .. after the surgery i would have to say the only good thing is that it looks a little better.. i dont have a huge toe nail on a hook anymore .. now i have a nub.. bone is at the top as well as stitches on the top crown all the way down the right side of the foot .. my disability was left in my hands because my mom didnt know what to do so ive been living like this for 20 years.. i had one prior surgery at the age of 4 and didnt seem to do anything but leave scars .. there is a lot of fat tissue around my ankle as well its barely visible but u can feel it if u push down were its suppose to be .. this has been a life long struggle .. not knowing whats wrong with my foot .. my mom didnt even know what it was called.. shoes that fit good are impossible to find .. not that one foot needs a bigger size and the other needs almost two sizes smaller .. i need a size 9.5 and a 7.5 .. disability says i should get special shoes…. i cant work …. my legs are also two different lengths left 5″6 right 5″4 causing back issues over time .. my toe is extra sensitive now and i have horrible balance ( always have due to the leg lengths) but with out the tip of my toe i cant lean forward to much or id fall .. they gave me a cane now im twenty with a cane and they still think i can work at walmart …. i go to physical therapy for my foot and they gave me percocet(pain) and flexeril(for the spasms) and something else to numb my foot … im effected everyday by this .. i wake up at night suddenly due to muscle spasms and pain i can barely sit in my college classes without adjusting my shoes … i never told anyone about this no female ive ever dated knows .. ( i dated alot . lol..) i never let this get me down i know i got to live life regardless of what i go threw … if your child has this disorder tell them
    even tho u are different and face struggles and pain i cant feel u can still do great things in this world …no matter how much pain i feel i will never show it , MACRODACTYLY HAS MADE ME A STRONG YOUNG MAN and very open minded and non judgemental .. i often enjoy my own company listing to native american flute music and thinking deeply just wishing someone in this world would understand what it feels like .. any questions just ask..

    Reply

  22. Finnora
    Mar 13, 2013 @ 06:58:08

    Hi! I’m so happy I find this site!
    My 14months son has a macrodactyly on his right index and middle finger.
    I myself noticed it for the first time when I was breastfeeding him for the first time. At that time it only looked bigger than the other fingers but not so much.
    Now the middle finger is like swollen and curvy to right side. The index finger is bigger than the left index finger but not so much.
    If I compare the middle finger with mine, for the size, I think it’s bigger than mine now, the length almost same length with mine.
    It can”t be bend at all.
    I wonder if we give him therapy will it bend?
    We haven’t go to any doctor related to the case, but his pediatric had informed us two hand surgeon for this case.
    I’m confused and wondering do we need to seek doctor help for operating it as soon as possible or we can delay it as and wait until he’s older.
    Also I’m wondering does the middle finger hurt with size like that.
    The pediatric suggest us that if we operating it sooner and then have the physiotherapy it will help him to get better faster.
    We live in Jakarta, Indonesia and this case is very rare here.

    Anyone has done surgery please advice and share what have happened before and after surgery. What are the steps and etc.

    Thanks all.

    Reply

  23. An
    Mar 28, 2013 @ 08:43:59

    Hello,
    I’m a 32 year old women from Belgium. I have macrodactyly on my right middle finger. I had several surgeries as a child. And after about 25 years I finally came to terms with it. Almost forgetting about it :)
    However recently the macrodactyly has started to affect the mobility of my hand, causing a lot of pain. And making it more and more difficult to write. The finger does not bend at all anymore and is just in the way. My surgeon suggested amputation
    Does anyone have experience with amputation in later life? With later in life I meant as an adult. My previous surgeries were all decided for by my parents as I was a kid. It must have been very difficult for them as not much information was available at the time.
    Although I don’t see any alternatives. I would like to know more about your experiences with the amputation.
    I have finally accepted my hand as it is now. It stands out but I’m used to it. I’m wondering what it feels like once the finger has been removed. Does it feel like something is missing or does the improved mobility make up for it?
    I know that there are worse things in live but wonder how people experience it emotionally. Is it confronting or do you get used to it easily?
    I would like to thank everbody for their posts. They were very interesting to read. AB

    Reply

  24. Charity Christensen
    Apr 05, 2013 @ 09:28:23

    Hi everyone,
    My 22 month old son was born with macrodactyly and syndactyly of his left middle and pointer fingers. He had his middle finger amputated at 6 months old because his surgeon thought it may have been pulling his pointer finger along. I brought him in periodically to track the progress of his remaining bigger finger, and a couple months ago his surgeon and I thought it was time to amputate it. His surgery was last friday, and his surgeon discovered the nerve in the palm of his hand had enlarged (we thought it was just fatty tissue that needed to be debulked) and his arm was now affected as well (getting progressively bigger). He mentioned that if he severed that enlarged nerve it would be highly possible he wouldn’t have use of his hand. Also, after he mentioned that his arm was getting bigger it REALLY scared me! We have a follow up appointment monday, but like any frightened mother, Ive been googling and trying to find answers myself or even places to go to have specialists examine him! I’ve only freaked myself out more I think, because what I have found says it’s life threatening! Where do I go from here?

    Reply

    • Lise
      Aug 29, 2013 @ 13:50:44

      Hi Charity! I would be interested in chatting with you. My 13 month old also has macrodactyly of the hand and her palm is affected and so is her entire arm. I was wondering if the doctors you see have said anything about what they can do about the arm.

      Reply

  25. peaches
    May 24, 2013 @ 20:07:48

    hi all my son has had macrodactyly since he was 6 months .i thought it was my fault something i had done during pregnancy.he,s had 3 surgaries and the last one they removed is toe. at the age of 24. he was not happy and still has hard time looking at his foot and very rarely show his foot. he has to live with it but im ever worried about him losing more toes.. a worried mum still even thou hes an adult still worry

    Reply

  26. Trackback: Prirođene deformacije dječjeg stopala I dio | Fizioterra
  27. Bri
    Jul 17, 2013 @ 14:00:23

    I’ve read all the comments left on here and I had commented 2 years ago at the age of 21. It brought tears to my eyes and hope in my heart for all of you. I’ve grown to be a beautiful woman, intelligent, and athletic and I’ve lead a normal life. Yeah it sucks I can’t wear flip flops and I need another debulking surgery on my right foot but few people know about my foot some are so accepting and encouraging others that I’ve had falling outs with have maliciously used it against me because they can’t call me fat or ugly because I’m neither it’s merely jealous girls who can’t stand the sight of me talking to anyone at the bars. I’m missing the second and third digit and it’s so displeasing to look at I won’t lie, I still cry over it and probably will for the rest of my life. I wonder why it had to be me and not my brothers or sister, and it’s just not fair for me to think that way or to blame my mother. It’s just difficult to deal with and I fully understand how everyone feels on here. However, it’s not the end of the world and God only bestows difficult situations to people that can handle them. Also, my father is a police officer and when the marathon occurred his fellow officers found limbs of children lying about and also witnessed limbs of adults, people lost everything and it’s just sad, but we have our limbs regardless of how cosmetically unfortunate it is to look at. I can hide my foot but there are others coming back from war with no legs, no arms, brain damage, and severe burns on their faces and bodies. This is what keeps me going and leaves me ever thankful. It also gave me a heart, to look at everyone as though they are beautiful and nothing makes me judge them for that. I’m so thankful for what I have, I played sports I still do, I have a degree and studied at college, I’m beautiful and yes it’s not conceited to tell yourselves that! What’s not to love? Oh my foot? That’s incredibly minor although we all think of it as a big deal and yes alot of the time I do! But encouragement is what everyone needs on here regardless of the times we feel hopeless.. as I do often but I tell myself these things to remind myself it’s not so bad it could be worse.

    Reply

  28. B
    Aug 19, 2013 @ 14:29:31

    Hello! I have a 4 year daughter born with macrodactyly foot (L). She has toes #2 and #3 fused together by skin that are exponentially bigger than the rest of her toes. She also has a very large mass on the ball of her foot that really widen her foot. Toes #4 & #5 are very small and they simply sort of hug like they were never fully formed. Toes #2 through #5 do not touch the ground because of the large mass under her foot–only toe #1 touches the ground and is the only ‘normal’ toe on her left foot. She never had any issues walking. At 4 she is very active and loves to do acrobatics, dancing, etc like I normal child. Our biggest problem is buying shoes. Since her left foot is so wide and high from the ground upfront, most shoes do not fit her. Shoes run very slim, especially for girls. The only place we are able to buy her split sizes without buying two pairs of shoes is Nordstroms, but even there our selections are limited because of the width and depth of her foot. Her feet are about 3 sizes in difference. It’s her condition that makes me want to be a shoe maker!! It breaks my heart that I cannot buy certain shoes she really wants, but we’re able to for her other 3 sisters. Another interesting problem we have is that her left kidney is multi-cystic (from gestation) and now only has one fully functional right kidney. Her left kidney is gone now and her right has grown to compensate for the dual work. I know her foot condition is merely cosmetic and is very healthy, otherwise! So we are blessed! She has a very strong personality and at her age I’m sure it’s normal not to understand why she has this condition. She gets very upset when we shop for shoes and gets saddened when other ask her about her foot. As many other mothers going through this, you can’t help but feel guilty for your children’s condition. I will say that 4 year or so before I conceived her, I was on Acutane for 6 months. Acutane has a high risk of birth defects and I wonder if the drug remains remained in my system all those years and is why she had said birth defect. I don’t know. All the reading suggests this drug does not stay in your system very long. Since her birth, I’ve had two daughter with no birth defects (my oldest is much older than the other three girls). I’, glad I found this site and hope to connect with some of you through this site for support.

    Reply

    • Jenn Duska
      May 22, 2014 @ 20:06:38

      Hi B…. My second son (Tyler) was also born with macrodactyly and syndactyly, on this right foot, 2nd and part of his 3rd toe… His fourth and fifth toes are completely proportional to the rest of his body but seem to be so small compared to the rest of his foot. He too has a large mass on the ball of his foot. We struggle with the shoe making as well and I would love to hear how you are making your daughter’s shoes. Nordstrom’s is where we can find sandals to fit Tyler, but we have to make his shoes in order to accommodate the depth of his foot. I would love to hear more about your story and share my experience with shoes.

      Reply

  29. transvaginalmesh lawsuit
    Oct 18, 2013 @ 17:50:00

    With havin so much written content do you ever run into any problems of
    plagorism or copyright infringement? My website has a lot of completely unique content I’ve either
    written myself or outsourced but it looks like a lot of it is popping it up all over the web without my authorization.
    Do you know any ways to help prevent content from being stolen?
    I’d certainly appreciate it.

    Reply

  30. Rebecca
    Nov 02, 2013 @ 05:44:07

    My son is 2 years old and has macrodactyly in the middle finger, index finger, and hyperextended thumb! We have been to several doctors since he was born and none of them have suggested surgeries yet, but lately he has been crying and he can’t sleep and all he does is give me his hand like he is in pain and it breaks my heart because I have no idea what to do for him. Any suggestions would be apprecicated. Thank y’all for sharing its wonderful to hear there are others out there for support.
    May y’all be blessed

    Reply

  31. valentina
    Jan 31, 2014 @ 22:59:19

    Ciao a tutti, sono Valentina e ho 18 anni.
    Sono affetta da macrodattilia di indive e medio della mano. Ho letto alcuni dei vostri commenti e vorrei permettermi di nominarvi il mio Professore che da ormai 10 anni cura la mia mano. I miei genitori hanno girato per tutti’ Italia e mi sono sottoposta ad alcuni interventi mal riusciti fin quando non mi sono recata a Monza dal Prof. Marco Lanzetta specialista della mano e da allora son in cura con lui. Immagino quanto sia difficile trovare le giuste cure perciò spero di esservi d aiuto. Imboccalupo
    Valentina

    Reply

  32. kait
    Feb 13, 2014 @ 03:38:31

    Hi,
    I am 21, living in canada
    I have macrodactyly, in the left hand middle and index finger. I had my middle finger amputated when I was 2. I definitely self conscious of my hand but it hasnt stopped me from doing anything that I love. I am finishing my last year of university. Advice for young children with macrodactyly is to not be ashamed, no one is perfect and if you tell your kids that, thats all that should matter. I never got bullied because of my hand people were always curious and generally interested. I am planning on having some of the tissue in my index finger removed for cosmetic reason but other than that i live a pretty normal life, i even play guitar hero on expert using only 4 fingers. haha

    Reply

  33. Anonymous
    Feb 19, 2014 @ 03:07:54

    I have macrodactyly on my left hand, I have had my middle finger removed. Why is it that all the information on this blog Is about feet and toes.

    Reply

    • macrodactyly
      Feb 19, 2014 @ 09:04:35

      dear anonymous, this is partly due to the fact that many posts on hand macrodactyly still needed my approval. I apologize for this. I am preparing a table with all the stories posted so far. I hope this can help. I think that hand macrodactyly is equally prevalent as pedal macrodactyly. I am not a doctor, I only do research in my freetime for my child and I post what I find here. Unfortunately there is only scanty information on outcomes. That’s why it is so important that even adults with this condition can post their story and share their long-term outcomes.

      Reply

  34. macrodactyly
    Feb 19, 2014 @ 09:05:17

    If you could provide more info on your story it would be very helpful….

    Reply

    • An
      Feb 19, 2014 @ 22:07:04

      Dear All,
      Thanks for sharing your stories.
      I had my middle finger removed last year (I’m now 33) because it was starting to cause me pain and serious inconvenience. I had trouble writing, gripping, holding things…
      The surgeons did a ray amputation with a beautiful “new” hand (as I call it) as a result. I’m very happy with the new look and thoroughly enjoy the occasional manicure. I can finally wear normal gloves. I just have to remove one finger.
      The scar is obviously still visible but strangers rarely notice there’s a finger missing.
      I’m glad I had the surgery though the first weeks were absolute hell. Phantom limb pain does exist (even for a finger). I had excruciating pain for about 6 weeks and had to resort to very strong prescription painkillers. Possibly also due to the fact that the nerve was five times the normal size. Though nobody knows much about it, some research on the net did reveal that this is common in macrodactyly.
      Thanks to an amazing team of physiotherapists I regained almost full use of my hand in no time.
      The nerve still causes discomfort (occasionally pain). Further testing revealed demyelination and axonal loss. Caused by the surgery or was the nerve already faulty? This also causes sensory loss in the top of the two fingers that were connected to the “faulty” nerve during the surgery. I have had corticosteroid injections. They offer relief for a couple of weeks.
      So my experience has both good and less positive aspects.
      It’s very difficult to give advice to other persons as every case is different and there’s just not enough cases (luckily).
      To the mothers and fathers, my parents still feels very guilty (Could they have prevented it? Have they taken the right decisions in the past?…). Especially last year when I had my surgery. I had already had several as a little kid. But they really shouldn’t. And neither should you. You all do everything you can to inform yourself. The decisions you have to make are very tough. And try and remember that you take them with the best intentions.
      The best of luck to all of you!
      An

      Reply

  35. macrodactyly
    Feb 20, 2014 @ 07:43:36

    Thank you An. We really need updates on how things go on when people grow up. I am happy to hear that you are ok, although you still have some discomfort. Please, continue to follow the blog and to write now and then…

    Reply

  36. Andrea
    Feb 21, 2014 @ 11:53:05

    hi everyone, my second son was born with macrodactyly and sydactyly, on this right foot, 2nd and 3rd toe.. He is 7 months old, we got an appointment at a Clinic in Hamburg (we are from Germany). Doctor told us that currently there are 2 options, 1) to amputate the 2nd toe and to correct the length of the 3rd toe. 2) to combine shortening and debulking for the 2 and 3 toe however he does not recommend to separate both toes as based in his experience he said this could affect his foot functionality.
    It was a great help to read all your comments, i think in this case it is better to try the second option and hope for the best. This clinic has a large experience in this sort of cases, so im really hoping for the best. I am worried, he is just a baby, a surgery is a big thing!

    Reply

    • Jenn Duska
      May 22, 2014 @ 19:55:00

      Hi Andrea…. My second son (Tyler) was also born with macrodactyly and syndactyly, on this right foot, 2nd and part of his 3rd toe… He is now 5 years old and couldn’t be more active! He even rollerskates and plays soccer. We were also told the same two options from our surgeons in (Columbus, Ohio, US) and have opted for option 2. Our struggles now have been to make shoes to accommodate the size of his foot while keeping him active in the sports that he loves. I would love to hear more about your story and share my experience with shoes.

      Reply

    • Nadine
      Jul 24, 2014 @ 10:28:22

      Hallo Andrea

      Meine Tochter ist 8 Monate alt und hat Makrodaktylie am rechten Fuss. 2. und 3 Zeh sind betroffen und zusammengewachsen (Syndaktylie). Ich würde so gerne von dir hören, was ihr nun unternommen habt. Ich erzähl dir gerne von uns. Wir sind Schweizer :). Können wir uns per e Mail unterhalten?

      Lieber Gruss
      Nadine

      Reply

  37. macrodactyly
    Feb 21, 2014 @ 14:23:10

    Hi Andrea, thanks for writing. As you see, there are many stories like yours here on the blog. Many parents have had to make difficult decisions for their children. I am sure you will end up with the best one for your little one. Please, keep up posted on the outcome of surgery, when it is over. I wish you all the best!

    Reply

    • Adventures with my Harp
      Mar 17, 2014 @ 23:03:23

      Hiya, one more story to add to the mix:

      I’m in my early 30s and live in the UK. I was born with an enlarged middle and ring finger, intitially the doctors described it as a “genetic translocation” and then when I around 20 they started saying macro-dactyl. Reading through the stories hear I was very lucky: my parents found excellent surgeons I’ve been well looked after. I’ve had 6 operations along the way and now have a very functional hand (I play harp). I’m left with a stump for my middle finger and a weird ring finger. I’ll always have to be extra careful with my hands but that’s ok.

      I think I’ve had it super lucky people-wise: I have no fear of my hand or it looking ugly and am well aware how few people notice in the first place; also I have very rarely (in fact maybe only once) had a negative reaction to my hand. I teach and play music for a living, my hands are on display constantly and it’s fine. I think I’ve probably spent an extra seven years sorting out the technical problems my hands have presented me.

      Info about the ops I had:
      Initial plan: to leave me with an adult sized finger around age 16
      Age 5: growth plates removed in middle finger (it was already as long as my mum’s)
      Age 6: debulking in middle finger
      Age 11: bone removed from center line of middle finger (it was getting very wide) and from ring finger, which was starting to twist
      Age 15: debulking in middle finger and ring finger

      Whilst I was at uni it became clear my hand wasn’t working properly, problems with stiffness and grip. I had two years of faff getting seen by the doctors again. By the time I was seen it clear that medical consensus had changed and that it was too hard to try to leave you with a “normal” finger through plastic surgery. So…

      Age 22: amputation of middle finger
      Age 27: an op to let my stump bend properly again, the caspule (tendon sheath) for that joint had got very tight and stiff and affected the whole of my hand when I tried to make a fist. The docs shredded the capsule then I had three painful (but oh so worthwhile) months of physio to get the movement back.

      Recently (aged 31) I had carpal tunnel symptoms in my hand, I have thicker muscles running through my wrist so it may be related to the m.d. Physio and a night splint fixed that. I also have ongoing physio to keep the stump joint working well. This has been really useful and my hand works much better as a whole now.

      Really glad to hear all the other stories. Just to say that it is totally possible to have a great life with m.d. – yes you will always have extra things to deal with, but that often sticks a lot of little worries in the right perspective. If anything my hand insulates me from rubbish people and let’s me find the ones really worth knowing.

      Really glad to see this project up and running – hope it goes from strength to strength.

      Reply

  38. Anna
    Apr 17, 2014 @ 05:46:26

    Hello everyone, I have MD on my right hand affecting by thumb and index. I can’t say it wasn’t hard growing up with it and not feeling insecure, which is still kind of an issue today at 22yo. However, it makes me the person I am today, and I can truly say that those around me never consider it a distinguishing feature of my life. For all those whose newborn or young children are suffering with it, it’ll most likely be just fine! Don’t look at it as being a roadblock in their lives.
    Pretty much anything that could go wrong with this condition (carpal tunnel, surgical hematoma, lymphatic edema) other than amputation has happened to me in the past and even recently, but it’s still manageable. Fortunately, I can say I’m pretty well rounded; I participate in any and every sport, play the violin and now applying to become a doctor, if anything it gave me the advantage of being ambidextrous (since I’m naturally inclined to be right-handed). In fact, I think MD influenced me in proving to myself and those around me that I can do almost anything I put my mind to, that it won’t impact my life in a negative way.
    Concerning medical decisions, I would say go for the debulking procedures however, seek second opinions! Don’t be shy – you can change your mindset to positively influence your outlook on your appearance. In my opinion, there are very few people who will judge you, VERY few (in my lifetime thus far, none).
    And lastly, if you’re insecure about MD, that just means you have to let your other amazing qualities outshine it! Find out what you feel the best quality is about yourself and exploit to increase your confidence. Anyway, I hope this helps, it’s truly how I look at being afflicted with MD. I realize I’m not the most severe case, but as hard as it please try not to be entirely pessimistic about the outcome – we have to deal with the cards we’re dealt with and if you feel surgery will help, by all means go for it and good luck!
    (sorry about the typos/grammatical errors, no time for editing!)

    Reply

  39. Kelinda Fisher
    Apr 18, 2014 @ 10:45:14

    hi my name is kelinda my 7 year old daughter has macrodactyly on her right hand which at first was only affecting her thumb . her first surgery was at the age of 2 when they had to also do a carpel tunnel release as the huge nerves were compressing on her CT giving her permanent tingling in her hand . at the age of 4 she underwent a 2nd operation where they removed some of the bone to try and straighten her thumb and also removed her growth plate . she now has macrodactyly now starting on her right index finger which means more surgery but one thing im worried about is she had a fall a few months ago and landed on that hand . at first they thought she may have broken it but xrays showed old breaks due to the surgeries she had already undergone. but since the fall she has a huge lump on top of her hand between her thumb and index finger close to the size of a golf ball which is making it difficult for her to do anything .i know she is suppose to be seeing her sugeons again in the next month which im certain will be another operation . wat worries me is shes getting to the point she cant take it and asks me why the doctors cant just take it away . how do you explin that to a 7 year old why they cant

    Reply

  40. Anonymous
    Jul 10, 2014 @ 15:05:53

    My daughter is 4 and has macrodactyly of her second toe on her left foot. She will be getting surgery to debulk her toe and bottom of her foot very soon. Im trying to find before and after pictures. She sees that everyone else in our family doesn’t have that issue and it bothers her. We always tell her that she is perfect.

    Reply

  41. Andrea
    Jul 24, 2014 @ 17:38:37

    Hallo!
    Ich weiss es nicht ob man hier die email adresse posten kann aber gerne kannst du mir eine email schreiben. Kspandora@googlemail.com.
    Wir haben noch nicht unternommen, unser termin ist erst im Okt. Der kleiner hat auch früh mit dem Laufen angefangen, hab mir viele Gedanken gemacht wie das überhaupt gehen soll, er hat aber kein problem beim laufen gehabt und mit den schuhen ist auch kein riesiges problem.
    LG aus Deutschland

    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

Follow

Get every new post delivered to your Inbox.

Join 34 other followers

%d bloggers like this: