Living with Madelung’s Deformity
I broke my arm when I was about 4 or 5 and I went about a week without knowing I had but when I finally went to the doctor they x-rayed it and questioned my parents and I if I had broken it before. They saw in the x-ray that I had previously broken it and I still have no idea when/how till this day. They began x-raying my whole body and they realized the makeup of my body was just strange so they sent me to a specialist who finally gave me the diagnosis. Madelungs deformity it was. He told me they couldn’t do surgery yet since I was so young but planned on it for the future. In 2007, at 10 years old I wanted to start playing sports but I was told I was going to have surgery that New Year’s eve. They went in to stop the growth of my growth plate and shave down my ulna and it helped a lot. I still had pain growing up and certain sports and activities were harder though. I went every year to see my specialist till I was 16 and he told me I would undergo another surgery but this one was a little more serious. In 2013, they went in to shorten my radius but in order to do so they needed extra bone to align everything so they took out part of my hip bone and realigned it with a plate and screws. I believe they call it a radial osteotomy. I was out of school for a month and a half so it was a pretty crazy timel. The plate and screws were hard to adjust to because it made the rainy days and winter time worse because of the aches and pains. I thought it was normal until my specialist told me that it was my decision if I wanted to go through another surgery to take out the plate and screws.. I thought about it for awhile but up until I started doing hair after highschool the pain became unbearable. So in 2015 at the age of 19, I made the decision to take out the plate and screws and it was my smartest decision for myself! I have my good days and my bad days, especially with doing hair everyday. It’s a lot of work for my wrist but it’s gotten way better. Over the whole time I've been dealing with here surgeries in my left wrist I never thought my right one was getting worse. I had to go see my specialist for it because the pain was becoming everyday. Just recently back in January of 2019, I had a radial osteotomy for my right wrist and they took bone from my left hip to realign it again. It really helped, its like I have a brand new wrist. The plate and screws were causing me a great deal of pain so at 23 I had my 5th and final surgery to remove the plate and screws from my right wrist and it was the biggest relief for me. I’m happy it’s all over now but everyone’s story is very different so always choose what’s best for you and your lifestyle! Meeting people with the same deformity has really helped me and keep me in good spirits so if I can do that for anybody reading this, please message me! I'd love to get to know you and hear your story as well :)
How did you find a specialist for this? I have just been diagnosed at 36 years old, but I've known for around 12 years now what it was actually called due to me searching for years and finally finding out through google. I never could find a doctor before now who had ever heard of it at all. I have seen 2 specialists this past week due to a dramatic increase in pain lately, and neither knows enough about it to be able to help; in fact, neither has ever actually seen anyone with it before me. They are trying to find a doctor who can help me, but they seemed a little discouraged that they can find anyone. Mine first appeared when I was 10, around the same time puberty hit. I've always had pain and been limited in what I can do, but I've also always adapted and just got used to them hurting. I have a pretty high tolerance for pain, but the past month it has increased drastically to the point I can barely handle being at work. I am desperate to find a doctor who knows anything about this and can help me.
Oh my gosh, so sorry to hear that! The pain can be awful I completely understand. When I broke my arm and after they x-rayed me they realized my hands and wrists were different along with my stature. They sent me to my now specialist just because he has training in upper extremity hands and microsurgery so I didnât really have to search for him which was a blessing. If you are willing to travel for a doctor who knows exactly what weâre going through he is most definitely worth it. I know thatâs easier said than done of course.. maybe if you could at one point maybe he could give you some more information on what kind of doctor to look for more specifically! So sorry to hear youâve been dealing with this and not having someone to help you. I wish you the best on finding a doctor that understands what youâre going through! I know itâs hard to be turned away doctor after doctor so I hope it wonât continue for you. If you need any more information Iâd be more than happy to help!!
