If the glove doesn’t fit…

My doctor’s appointment is tomorrow. I’ve been waiting for this appointment for about four months, after finally discovering the name of the condition I believe I have. I discovered the term brachymetacarpia and the surgery that can possibly fix the condition through a routine Google search one day after my friend came back from class reporting on another disease he learned about that has the symptom of shortened ring fingers. I knew I did not have the disease that he mentioned, because besides from my strikingly short ring fingers, I’m pretty much perfect. Still once again my curiosity got the best of me and I tried to find a likely reason for my condition. While I still don’t know the cause, I found a picture of a hand that looked very similar to mine. The picture was part of a paper about the surgery the girl had to lengthen her finger and the results were quite impressive. From what I understand, the doctor cut her shortened metacarpal bone and attached an external fixator with pins attached to the bone. The girl turned the pins herself over several weeks, separating the gap between her bone and her bone grew to fill in the gap, resulting in a normal looking finger!

After finding this paper, I’ve been fascinated with the surgery and the possibility that it could work for me. Since first noticing my hands were different from others at about age 7 or 8, it’s always been something I wished I could change, but never thought possible. I did more searching for more doctors performing the surgery and patients with similar histories; finally I decided to make an appointment, book a flight to go to New York and meet with an orthopedic surgeon at the hospital that performed that girl’s surgery.

Through my expert googling I found several blogs written by people who have a similar condition, but on their feet, called brachymetatarsia. Based on the numerous blogs and even news coverage of brachymetatarsia, the surgery to correct a shortened toe seems to be a little more common in recent years. Their blogs have definitely been helpful in preparing for my appointment and the questions I will ask tomorrow, but I’m not sure how much recovering from a surgery on one’s toe relates to the surgery performed on one’s finger. I don’t think I’ll have to worry about not being to walk, but how to dress myself might be a problem. For some reason or other, people have not written many blogs about having broken hands! And perhaps my goal of keeping a blog while having this surgery is a bit too lofty. But in the hopes that I will learn tomorrow that I am a good candidate for this surgery and that I will still be able to type, which is quite important for my livelihood, this will be the first entry of my blog.

In the last four months I’ve thought of a lot of questions that I can’t wait to get answered:

  • Have other surgeries besides the one in the paper performed?
  • How long does it take for the bone to grow with the external fixator and then to heal completely once it’s removed?
  • How much use of the rest of my hand will I have with the external fixator on? Can I get my hand wet?
  • Is it possible to have the surgery performed on both hands at once or will I need to do one finger at a time?
  • Will I need to take time off of work? How often will I need to make appointments with the doctor?
  • How long does it take for the scars to heal?
  • What is the most likely cause of brachymetacarpia? Will I pass it on to my children?
  • How much does the surgery cost? Will my insurance cover it?

I’m sure there are a ton more things I should ask and hopefully meeting with the doctor will help me think of some of them. I’m already super anxious because my appointment was bumped up from 11 AM to 8 AM because the doctor is in surgery later, so I hope I have enough time with him. Well either way I’m excited to have a weekend at home with my family. It’s been a long time since I’ve been back.

Bedazzled and short

My left hand: bedazzled and short

No knuckle?

No knuckle?

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11 thoughts on “If the glove doesn’t fit…

  1. I would like to know how everything worked out, I have the same condition you have. I’m so amazed I found someone with the shorten ring finger and no knuckle.

    • No, my pediatrician growing up was never able to provide a reason for why my hands looked like this, nor could my orthopedic surgeon, but he could fix it! Something caused the growth plates to close early but don’t know if it was a childhood sickness or genetics. Up until age 8 or 9 my hands looked perfectly normal and no one else in my family has similar hands. Fortunately I do not have any of the conditions that sometimes cause brachymetacarpia.

      • Hello, my ten year old daughter was diagnosed with the same condition last October. Her left hand looks identical to yours. The shortened fingers did not become obvious to me until she had gone through a major growth spurt at age ten. She seems to be very self conscious about what other kids think, etc. I feel strongly she should wait to get surgery done, if at all as an adult. How satisfied are you with your surgery results? Thank you for your time.

      • I continue to be very satisfied with my results.

        I had my surgery 7 months after I found out about the surgery. For me, since I was already 24, I knew my hands weren’t going to grow anymore, so it made more sense to have it as soon as I was able to as I was only going to heal slower as I got older. The odds were the longer I waited there would be more obstacles in the way, with job changes, moves, family obligations, etc and I’m glad that I had the surgery when I did. If I had known about the surgery sooner perhaps I would have had the surgeries done during summer break in college or after I graduated, just because I was living at home in New Jersey during those breaks anyway. The fact that I made the decision to have my surgery while working and living in a different city, where I would have to be responsible for the majority of my care on my own, made my family realize how important this surgery was to me. I think they trusted that I had done my research and was not making the decision capriciously, which made them more supportive of me having such a novel surgery.

  2. Hello, thank you for your response! You made an excellent points about when the right time was for you to get the surgery done. Since my daughter is so young still and has more growing to do (up to age 18, I believe), it’s probably best for her to wait at least until her teenage years (if, psychology she can wait that long, since she is pretty worried about what her peers will think of her, once they really notice her hands. It’s her ring finger on her left hand and her pinky on her right hand.)

    When I took her in for her finger diagnosis for the first time back in October, the Dr. suggested that she should have her thyroid tested, however, I was quite surprised with her Brachymetacarpia diagnosis, and I ended up not going through with the thyroid testing. Also, due in part that she does not have any noticeable thyroid systems. The Dr. also recommended genetics testing, but again, I have no family history of any sort that would warrant genetics testing. I was a little upset at first with her suggestion because all the testing would not undo my child’s finger abnormality. What is your perspective on this? Am I being too closed minded?

    Like you, I had asked the Dr. about her experience with these kind of cases and she admitted that she has only seen a “handful in her practice” and that she mainly specializes in arm surgery. At that point, I realized my journey to help my girl had only just begun.

    I have done a lot of internet research, but have not been able to find but a few specialists in the US for this condition. And out of the few I have found, some will not do corrective surgery for cosmetic reasons; only for better function.

    I tell my daughter how beautiful and smart she is everyday. I hope as she gets older, she will become more accepting of her condition and hopefully make the right decision when she is older on whether or not to have her beautiful fingers corrected by surgery.

    Any suggestions and or opinions from your view point is greatly appreciated! Thank you! (And I really wish more research could be done to find out the cause. Is it genic, environmental, pesticides, chemicals in toys, injury, using the hands too much in early childhood, etc.?

  3. If you really wish that there was more research on what caused this condition, then yes I think you should consider getting the genetic testing. For me it was never recommended. My pediatrician didn’t know what was wrong with my hands at all. One time when I was at the podiatrist for foot pain my mom asked the doctor there. He seemed less surprised by my hands but had no suggestion about what caused it. My brother, who was in medical school at the time, did question my mom about my development to make sure I didn’t have any serious conditions such as Turner’s syndrome.

    I think because my parents didn’t make a huge deal about it, it didn’t really bother me that much until I got older. The more people noticed it the more self conscious I got, but at first I even thought it was cool and would show it to people. My sister liked to tell people about my freak hands and wanted to show them to her friends. I think that was what made me start to hate my hands.

    As an adult every once in a while people would notice my hands and say something to me, but I can only think of it happening a few times in the last couple years before my surgery. I definitely remember them distinctly, which suggests that they did make an impression but didn’t happen all that often. Once I had the fixator on though, a lot more people noticed. Random people on the street sometimes stopped to ask me what was on my hand. When I explained the fixator to my friends, a lot of them told me they had never noticed my hands were different. So in my experience it really is only as big a deal as you make it.

    I had the surgery not because I cared what other people thought, but because I didn’t like how it looked to me. When I had no clue what the name of my condition was or that there was a way to fix it, I didn’t like my hands, but I accepted them. Once I knew I could change them, I desperately wanted to.

    I could never imagine having the surgery as a child or teenager. It was very painful at times and required a lot of diligence on my end. I had to make sure my pin sites were clean, watch for infection, do daily hand exercises, make sure to turn 4 times a day, take vitamins, manage my pain medicine, go to physical therapy, sleep in splints, use the bone stimulator etc. For me I was able to make the cost analysis between the things I didn’t want to do and how bad it would be if I didn’t do it. It took almost a whole year from start to finish to be done with both my hands. It was a long time but I knew there was an end in site. I’m not sure how many children understand that. Even at age 18 I don’t know how well I would have handled it; I broke a metatarsal in my left food the day I graduated high school. I was given a boot to wear but it was the start of summer, it didn’t hurt that badly, and I was pretty sure I was invincible so I stopped wearing it early!

    That’s not to say that no kid could have this surgery and handle it well. I saw plenty of kids in the doctors’ office who were having serious conditions fixed. For the most part they were well behaved and getting by with a positive attitude. I don’t think any of them were having surgery for cosmetic reasons. They were having a leg lengthened so they could walk properly or having surgery after a major accident.

    My advice to you is to read my blog if you haven’t already. I address most of the hand things I encountered for the whole year of my surgeries. If your daughter really wants to have the surgery one day I would suggest she read my blog too at some point. But like I mentioned before, my hands only became a big issue for me the more I and others focused on them.

    • Hello,

      Happy New Year to you & I hope this note finds you well! Wow, your response has. really helped me to have a whole new perspective on things I totally understand and see where you are coming from and could not agree with you more on just about everything you had mentioned. I will wait until she can make her own decision as an adult, on whether or not she wants to have corrective surgery done.

      I have read through all your blogs before I initially contacted you & was happy to know that my daughter is not alone with her condition. Her development seems far ahead for her age, She is a very good height at 5′, 3.5″ and she continues to be an honor student. I am reluctant to have her get genetically tested, as I do not want to further emphasize the condition to her. Maybe, as an adult, she can choose to get in depth testing done.

      Thank you again for your responses! I feel so much more at ease with my decision to have my daughter wait to have surgery done, if ever, in the future. 🙂

      Take care!

      Nikki

  4. So happy I found this blog and see other people with my condition. I have a “no knuckle hand” on my right hand. My mother noticed it when I was in 4th grade. I remember crying. I think I was afraid of surgery and the unknown. I never had anything done because the Ortho doctor at the time (not a hand surgeon), said I may end up with nerve damage to the finger. The only time in my adult life I had an issue with it was my 1st marriage in the Greek church. The ring was placed on my right finger so I did switch it to my left hand since it was too tight on my shortened finger. Otherwise, I’ve lived 50 years with this uniqueness without a problem. Nobody notices it unless I point it out.
    Thanks to all who posted. I really enjoyed reading this blog.

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