Connections » General Discussion

Congenital Macrodactyly?

(23 posts)
  • Started 5 years ago by loristahl68
  • Latest reply from residentevil345

Total votes:

  1. loristahl68
    Member

    I'm new to this website (and very excited to have found it) and am wondering if anyone out there is familiar with congenital macrodactyly. Our daughter (almost 4) was born with enlarged pointer and middle fingers on her left hand, and her left arm has been growing way out of proportion as well. We have felt very isolated in terms of finding any kind of support/ information/ help, so ANY feedback is great; specifically, too, we would love to hear experiences or opinions about operations (we've done nothing yet). Also if anyone knows of neurological work (since that is the root of the growth)?
    I have a million questions but for now will keep it brief, in case no one is out there with anything to share...
    Thank you so much,
    Lori

    Posted 5 years ago #
  2. mkmkbear
    Member

    Hi Lori-
    I don't know if we have talked before, but my son has macrodactyly. He will be having his 4th surgery soon. Let me know if I can answer any questions!
    Kim

    Posted 5 years ago #
  3. loristahl68
    Member

    Hi, Kim,
    Thank you for writing! So far, you are the only person (ever!) that I have 'met" who has a kid with this same diagnosis, so I am full of questions etc. How old is your son, how have the operations helped, how is he with it all, etc. etc?! Anything you have to tell me, I want to hear. Our daughter turned 4 yesterday, and so far we have just done some pain management for the carpal-tunnel-type pain she experiences, and are very hesitant as far as surgery (but open to it if it seems helpful).
    Thank you so much, in advance,
    Lori

    Posted 5 years ago #
  4. mochaholic
    Member

    My daugher is now 7 & was born with macrodactyly which affects her left palm 3,4, & 5th finger.

    She has had 2 surgeries early on and I feel the Dr. is now at a stand still. We are in search of a specialist who has had success in this and so the search is one once again. We are trying to make contact with a hospital in Boston & St Vincents Hospital in Indiana.

    Surgery I feel is better when they are younger and I'm glad we had it done then. She had some debulking with little success, and they had amputated one of her planges and moved the nail bed down. I feel the only progress we have made is the shortening of her ring finger. Her palm is pretty swollen and her middle finger is now being affected.

    LORI - What hospital has done you sons surgery? Also, have you been happy with the outcome?

    Posted 5 years ago #
  5. Rachellxx39
    Member

    Hi i live in the uk,My daughter aged 13 has Macrodatyly of her right foot. She has had 5 operations so far is waiting for another.She is in alot of pain at the moment and is due to one of her toes and some of her foot amputated . I would like to know of any other parents who have children with this condition . Thanks Rachell

    Posted 5 years ago #
  6. Tabstract
    Member

    Hi all,

    I just wanted to write my story here. I'm 27 years old and have always had an enlarged right index and middle finger, which although is ALWAYS a conversation starter, has never really perturbed me.

    Recently, I found my X-ray report from when I had it assessed as a 3 years old. The report said I had congenital macrodactyly. Odd how I never really went to get that diagnosis myself. Mine is very benign - My middle finger about 1.5cm longer and about 1cm wider than what it should be; the index finger only marginally so.

    This year I graduate from medical school, and I've never even heard of the diagnosis throughout my training!

    Am happy to talk to others about my or their experiences.

    Posted 5 years ago #
  7. Jamjar100
    Member

    Hi all,

    I was born with macrodactyly of the right arm and hand.I have three digits on the hand, the index finger was amputated at approximately the age of 3. The thumb and small finger are the two which look relatively normal. within the last three years, I have developed benign lumps (diagnosed as lipofibromatous) in the arm and the hand, biopsies has taken place showing two of the numerous lumps to be benign. I wondered if anyone else has been affected as above.

    Also, could anyone recommend a consultant who had dealt with macrodactyly? Any information is gratefully received. I know my arm/hand will never be 'normal' but it would be great to keep up with any developments.

    I would like to add that I am now 32 years old, have a successful career and always lived ife to the full. This is all thanks to a strong family with parents which ensured I lived as an independent person.I have chosen to think of macrodactly as a gift which has provided me with compassion and empathy and ensured that I live life to the full...although there are rare occassions when that is not easy and that is when my family and good friends are thee to pick me up!

    Posted 5 years ago #
  8. nlozano819
    Member

    Hi there. My name is Nic and I am 25 years old. I was born with macrodactyly in my right hand middle finger. It has been a growing problem all of my life. It wasn't until i was 15 did they decide to operate on it. The first two surgeries were within a 6 month span by a plastic surgeon...big mistake. We had no idea what we were dealing with so we of course bit on the first doctor who would actually look at it. I finally saw a doctor when i was 17 who specializes in hands and actually gave me a name for this...macrodactyly. Finally, something i can research, at least a name of what this painful condition is. The surgeon i worked with did a very extensive investigation of my finger and hand. he worked very closly with a neurologist at the Mayo Clinic. Their plan of attack was to remove the nerve from the middle finger. It worked wonderfully...for about 5 years. Once the nerve rejenerated it hurts more than ever. I am not 25 and with my children a little older i can take on the challenge of trying to find a doctor who can give me some hope. I recently went to a hand specialist in Jacksonville, FL and he shattered my hopes that modern medicine has somehow learned more of this. I keep hope alive. I hate that anyone else in the world is dealing with this, but it is comforting to share this story with those who can truly understand the pain, and even embarassment of this condition. I have been spoken to by 3 surgeons and all 3 agree that amputation is not the cure. You run the risk of phantom feelings as well as the tissue could very well exist in other fingers. I have the tissue growing into my palm as well as into my ring finger. So, if i could offer even the littlest advice, wait. Don't ampute it. Give medicine more time. I have undergone 3 surgeries so far but i just cannot imagine loosing my finger or hand. If i can be of any help to anyone, please let me know. Thank you for listening to my story.

    Posted 5 years ago #
  9. elizabethnelson
    Member

    My five year old daughter has macrodactyly of the index finger and thumb on her right hand. She is fresh out of surgery and look forward to seeing the results in 3-4 weeks. The Dr. from Calgary Children's Hospital was able to remove a triangle piece of bone in her index finger to straighten it as it had become quite deviated at a 36 degree angle, also he was able to debulk her finger. She is in a full arm cast for the next 8 weeks depending on healing time, although the Dr. did say that macrodactyly operations always take the longest to heal. The Dr. has been absolutely fantastic at answering questions, we visit every six months for xrays to see how the finger / thumb have progressed. I was so very happy to find this blog and look forward to future postings.

    Posted 5 years ago #
  10. mushroomtoes
    Member

    Hi my name is shlomo I'm 22.I was born with 2 overly large toes on my right foot.I don't know if its the same but but definitely sounds close.I've operated on it once and thank God it was successful. I'll be more than glad to share experiences & procedures.If i could be of any help plz feel free to contact me @ sf51586@gmail.com.

    Posted 5 years ago #
  11. Bigtoe71
    Member

    Hi there! I came across this website while searching for more information on macrodactyly. I am 38 years old and have had more than 2 dozen surgeries on my right great toe for this condition beginning at age 15-months. In addition to the constant pain from the arthritis I have in that toe, the missing 1st MTP joint of the toe causing bone to rub on bone, and the continued problems with footwear, I now have cysts or neuromas that repeatedly present in my foot, ankle, and knee. I have trouble finding a surgeon that is willing to touch the actual problem in the toe because of the scar tissue and arthritis from previous procedures. I had all the best doctors in Boston, Massachusetts work on my foot throughout my childhood. At age 12 they told me that my x-ray looked similar to one of an 80-year-old woman. I was also told that by the time I was 25 I would be in a wheelchair, but I am NOT! I was active in high school sports and dance lessons throughout my childhood and adolescent years, with the pain as a constant reminder that I was different and I was defying the odds.

    I am currently looking for a surgeon that has more experience with the condition, and hopefully some better and more advanced treatment options. My parents did all they could and were told to do when I was younger, but it is such a rare condition that a lot of doctors are not specifically trained on it, or have even seen a case.

    Before putting your child through countless operations, do your homework and interview lots of doctors.

    Posted 5 years ago #
  12. kysummer
    Member

    My name is Betsy Coleman I live at Belfry, Kentucky. I'm 38 year old white female with macrodactyly of the right foot just the big toe. I've had since birth.i had my first surgery when i was 18 months old.I've had to have 14 surgeries on my toe. The toe grew a lot faster & bigger then my foot. The last surgery I had on my toe was in 1987 at Good Samaritan Hospital in Lexington, Kentucky by Doctor Lewis Mildrow M.D. The past 2 years my toe growing again and I've been having a lot of pain & trouble out of my toe & foot now. The Doctor who did my surgery 1987 has since passed way. No doctors in my area will help me they all tell me that they not seen any case with Macrodactyly of the toe. I've looked and called ever place I know. So can you Please help me or let me know any other doctors you can. My E-mail address is kysummer@yahoo.com Thanks Alot, Betsy Coleman

    Posted 5 years ago #
  13. HelenFullHouse
    Member

    Hi, my name is Helen and I work for a real life magazine called Full house! I'm the health editor and I'm looking for people or their children with macrodactyly that would be interested in doing a case study with us. You will get a one page spread and one photo to accompany your story. It will give great information to readers and allow them to understand the condition. I will need photos of the condition for our readers to get a good feel for the story. Please get in contact with your inspiring stories. thank you. helen.lafferty@fullhousemagazine.co.uk

    Posted 5 years ago #
  14. Mina001
    Member

    Hi,

    My 5 year grandson has macrodactyly on his right foot. He was born with an enlarged second toe and has had two surgeries to correct the problem. We are from Shreveport, LA and only one pediatrician even had heard of this anomaly and sent us to Shriner's Childrens Hospital. We are fortunate to have one in Shreveport. At thirteen months doctors debulked the second toe and sent us home to wait it out. Trenton is a trooper and has never had a problem adapting to his special situation. He wore a knee cast for six weeks and then learned to walk again. Then after seeing that the tumor was still growing we headed back into surgery when Trenton was 2 1/2 years old. This time the second toe and the bone were removed and the underside of the foot debulked again. He was in a hip cast for another six weeks and once again came out of it ready to hit the pavement.
    For the past two plus years Shriner's has been watching Trenton and the tumor is still growing. When my daughter and I went for his visit last October 2008, we were shocked by the diagnosis as a severe case of macrodactyly and the prognosis grim. Horrifying I assure you to hear the staff surgeon explain our options. Most likely amputation partial or at the ankle recommended. After trying to collect myself I wanted of course another opinion and the Chief Surgeon came in and echoed the same outcome. Of the on going study and rarity of this condition the surgeons have followed several patients of which all ended up with some form of amputation. Trenton's shoes do not fit, he has been wearing either two different sizes or shoes too big for him as long as I can remember. Last October, Shriner's made an insert for him for the normal foot and that has not worked either.
    It has been six months and we go back to Shriner s tomorrow on April 1, 2009 at 10:00 am.

    Teri

    Posted 5 years ago #
  15. Our beautiful granddaughter was born with Macrodactyly involving 3 toes on her right foot. She has been treated at Shriners hospital in Salt Lake City. They amputated the 2nd toe, and half of the middle toe. She does very well - but does have to wear two different shoe sizes. Would love to be in contact with others dealing with the same problem. Feel free to contact - woodjo66@msn.com

    Posted 5 years ago #

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