In this uncommon condition there is congenital fusion of the proximal ends of the radius and ulna, fixing the forearm in varying degrees of pronation. In about 60 percent of cases, involvement is bilateral.
Male and female incidence is approximately equal.
There are three types of radioulnar synostosis.
First type is true congenital radioulnar synostosis where ulna and the upper end of the radius are closely fused together. The radial head may be fused to the ulna, or it may be completely absent.
The radial shaft is bowed to a greater degree than normal and is longer and thicker than the ulna. A
The second type is that in which the radial head is malformed and posteriorly dislocated.The proximal end of the radius is fused with the upper shaft of the ulna.
In the third type, the rarest, the ulna and radius may be attached, at a point just distal to their upper ends, by a short, thick, interosseous ligament that prevents any pronation or supination, just as if the bones were fused together. This is not a true synostosis.
Congenital radioulnar synostosis is hereditary in some cases, appearing to be a dominant trait . It is caused by a developmental arrest of longitudinal segmentation.
Clinical Findings
There is no motion of the radius or the ulna, and the forearm is usually fixed in a position of mid-or hyperpronation.
The lack of supination of the forearm is compensated for somewhat by rotation at the glenohumeral joint, though it is impossible for the palm to be fully supinated. The elbow joint and the wrist are able to move freely, though extension of the elbow may be somewhat limited.
The degree of functional disability varies according to the position in which the forearm is fixed. It may be minimal if the condition is unilateral.
The child may have difficulty with such activities as turning a doorknob, buttoning shirts, and handling eating utensils.
The involved forearm is thinner than normal and somewhat twisted in appearance.
Treatment
Each patients should be individually evaluated to determine the treatment required. Surgical separation of the synostosis is not advised, as results have been poor.
In cases of extreme pronation, an osteotomy in the proximal thirds of the radius and ulna may be performed to place the forearm in functional position.
DeeDee, My son is now 13 and has radial ulna syntosis in his left arm, he would be very happy to discuss this with your son as he manages brilliantly, he is even a goalkeeper! I don't know how we are allowed to get in touch with each other? Dr Singh could you please advise, thanks
@Linda Miller,
You can join communities. There is not much activity it is fantastic way of interacting and sharing.
Check it out here http://communities.boneandspine.com/groups/congen…
I too am surprised to hear of so many others with the same problem as I have. I've lived with limited rotation in my arms for as long as I can remember. The biggest challenges for me have been taking change, typing, and properly using eating utensils…..like so many others have commented on! Also, as a girl, I wasn't able to participate in gymnastics either. Playing sports wasn't a big deal until I became interested in tennis during high school. The coach was constantly telling me to "straighten out my arms"!! The problem I'm having now, at 36 years old, is keeping my left arm from "locking up". I learned to knit about a year ago and I'm assuming the stiffness is from holding my arms in a certain postion for a length of time. Only now I'm unable to get it extended back to what I consider normal. It's too sore to stretch and much easier to just compensate but I know I need to see someone about what I need to do. Anyone have any ideas?? I also have a 5 year old son with the same problem:(
My son is 5 years and has radio ulna synostosis in both hands. He cannot rotate his hands and it is difficult for him to perform basic jobs of life – like coloring (as in shading), shampooing, combing, holding utensils, catching a ball. I had seen many doctors and i came accross one doctor who suggested correction of the ulna for my son. He said that in the surgery they would cut the bone in the forearm and place it in a way that my son is able to shake hands with people and hold things and do basic routine work easily. And i went for it. My son has been operated only last month and i am yet to see changes in him. It is too early to make out the difference. There is an improvement but can't say much at this stage. May be in a few months i will be able to judge if i have done right or wrong by getting this surgery performed on my sons hand. I am crossing my fingers and hoping that it is good for my boy.
I am a 46 year old man I was born with congenital forearm fusion in both arms left is worse then the right, because of this I have carpal tunnel in both wrists. I have had bone pain in the right and left arms but lately the pain is getting much worse in my right arm it goes from my wrist to my clavicle im having a real hard time with lifting my hand to my face without excruciating pain in forearm and shoulder. I'm right handed, my left arm hardly gets used it's weak and smaller then the right I have pain in the left but but not as bad as the right.
when I was checked out by a doctor when I was little because I couldn't hold 6 M&M's In my up turned cupped hands. they said they could fix my issue after fully grown but the chance that it would be successful was 50/50
I apt not to do it.
wow there is alot of folks with this issue!
playing a guitar is impossible in my case, scratching the middle of the back is also impossible, holding dishes on the back of your hand. I found driving is my best thing I can do holding the steering wheel is quite comfortable carry a cup with you when collecting change I get some ugly looks when you flip your arm over backwards to collect change, by the way no one can beat you in arm wrestling for one your arm will never hit the table unless they brake your one bone if your like me my radius and ulna are fused 75% , you can make you hand cup really good if you bring your elbows to your chest. I figured Id say some of what I can do witch isn't much but it's better then nothen and if anyone of you would like to email me.
Ed Note: Email address removed, not allowed.
If you are looking for connecting with others with same condition, please join here and invite others.
I am a 39 year old male who never looked up "my arm thing" before on the web. I had an x-ray when I was younger and fully understand the condition. (My bones are fused about 75 %) However, I thought it was so rare that I never would encounter anyone else with it. Although it made me feel even more uneasy during adolescence, and I got my fair share of teasing, it has had little affect on my life. People think it's cool when I hold a plate on the top of my hand; and when I shake hands, I am immune to the macho guy thing of having the "dominant position", as it is impossible for my hand to be "dominated" in a hand shake. I do have carpel tunnel in both arms (but working on a computer your whole life will do that too), and I deal with a lot of pain in my hands when doing a lot of heavy lifting (moving and such). I cannot master chopsticks and don't hold utensils like most people, and I have to make some adjustments to my golf grip and swing, but if that is the worst I have to deal with in life then I am way ahead of the game. As one of my buddies told me, "It's just your 'thing'".
Thanks to you all for posting. For some reason I feel much better knowing there are others out there with the same thing. How cool!
I'm so glad I found this page, I'm going through a rough patch with my condition, I cannot supinate my left hand and for the longest time I have felt so alone in this. Anyway… I have wanted to go to school for cutting hair and I am finally on my way to do it, than I suddenly remembered my hand…. I asked the admissions advisor if she thought it was impossible and she seemed hesitant at first, but than she said I should be fine. I don't know what to do now…. I want to cut hair, but the more and more I watch videos of people cutting hair I see how important it is to supinate your left hand…. =/ I talked to my mom about it tonight and she told me I could do it and that I have adapted all my life, but I don't know… I just don't see this as something I can pull off… what are your thoughts? comments?
Veronica,
I have been a part of this comment page for awhile now. I am 38 and have it in both arms. Let me just say that I have been having pain in my wrists, elbows, shoulders, and scapulas. It doesn't stop me from accomplishing the things i wanted to do. I use my debit card for everything I buy, I have learned to use the back of my hands to carry plates (sure I get the looks), I am the most proud of the fact that I am a drummer, a pianist, and play all guitars with my left OVER the neck of the guitar. What I'm trying to say is that you can do anything, having this condition, if you're willing to find some sort of pain management (deep tissue massages seem to help the muscles best) and not caring about those goofy looks from people. This condition didn't stop me from living my life or accomplishing my dreams, it shouldn't stop you from yours. P.S. No doctor will know what to do except run a bunch of tests costing you money, just to tell you either try the surgery (not!) or keep coming back for useless follow up appointments. Good luck finding a doctor in your area who SPECIALIZES in this condition! I hope I was able to help in some way. Good luck, maybe I'll get a haircut from you one day. I would be honored!
Veronica,
I have been a part of this comment page for awhile now. I am 38 and have it in both arms. Let me just say that I have been having pain in my wrists, elbows, shoulders, and scapulas. It doesn't stop me from accomplishing the things i wanted to do. I use my debit card for everything I buy, I have learned to use the back of my hands to carry plates (sure I get the looks), I am the most proud of the fact that I am a live and studi performer filing in as a drummer, a pianist, and all types of guitars with my left hand playing chords (or notes for bass guitar) OVER the neck of the guitar instead of under like everyone else. What I'm trying to say is that you can do anything, having this condition, if you're willing to find some sort of pain management (deep tissue massages seem to help the muscles best) and not caring about those goofy looks from people. This condition didn't stop me from living my life or accomplishing my dreams, it shouldn't stop you from yours. P.S. No doctor will know what to do except run a bunch of tests costing you money, just to tell you either try the surgery (not!) or keep coming back for useless follow up appointments. Good luck finding a doctor in your area who SPECIALIZES in this condition! I hope I was able to help in some way. Good luck, maybe I'll get a haircut from you one day. I would be honored!
I am 19 years old, and I just realized that I had this condition some 2-3 months back, until then, I very much did happen to notice that there was something weird with my hands. For so long, into my existence, I've been thinking that I am a little less flexible than others, going to the gym is kind of hard, its when I do my biceps that they start giggling, my hand position, palm outwards, and bringing the dumbles to your shoulders, It actually does look funny
It ain't my fault I'm born this way 
and yeah, its alright with this condition, I think there are actually people, who are far more worse when it comes to being handicapped, holding utensils is tough…but yeah….livin on 
Hello all. I am a middle aged woman with congenital radial ulnar fusion, like all of you. However, only in my left arm. All my life I dealt with the odd things everyone has mentioned…but not being able to cup my hands always bothered me. However as life went on I just became adjusted to this is the way it is and did not think much of it. Being older now I can say it was not a terrible problem I could not deal with. I think one of the larger issues was that I always carried everything in my right arm, including my children which now has caused a curve in my spine. So I would encourage young people to strengthen both sides of your arms equally. I also am a tennis player and since I was a child I adapted by tossing the ball by forming a circle with my left thumb and index finger. It has worked beautifully for me for decades. Although right handed I learned to play guitar left handed since this was possible with my arm situation. So much is possible, however I only have this condition in one arm. I agree with the person who mentioned deep tissue massage for those muscles, tendons and ligaments that can become painful. I also understand the biceps curl problem too, but you can adjust, just do it over hand rather than under hand.
Hi there,
Our son was diagnosed with this condition (left arm) when he was just four months old. At first we were confident that it might get corrected, but we are learning that the results are generally poor, and surgery is frightening no matter what. Since both his father and I were college athletes, we had these big dreams of him following suit (silly, I know, since he may not even be interested in sports)), but what we have learned from all of this is that it's only as big of an issue as we make it. Our son is doing just fine, knows no different and we are blessed. (also blessed for having found this site). I am curious as to how others' parents handled it? Or, to the parents, how do you talk about it with your child, as he or she realizes she's different? Thanks!
Hi, my youngest child of 8, was just recently diagnoised with RADIOULNAR SYNOSTOSIS. He will b 2 this month… I am concerned about his ability of learing how to do things. Can anyone please give me some advise if so please e-mail [Edited]. Thanks so much in advance LaTonya
ED Note: Emails not allowed to be shared. You can visit Bone And Spine Forum to share and discuss.
Hello my name is Luis and I was also born with radioulnar synostosis on my left arm and a little on my right arm, I have been lifting weights and doing swimming since I was 15, I'm currently 19 and me and my parents are traveling to Houston so we can try to find a surgeon who would help me with this. I will be posting about the results of the surgery to let you guys know if it is performed.
Hey,
I never realized that other people had this condition. I have fusion and dislocation in both of my elbows, caused by Alagille Syndrome. I have had surgery to move my ulnar nerves in both elbows, as I was losing feeling in my fingers and could no longer feel temperature variances in water. I also hoped it would relieve some of the pain. It was successful for the left (my dominant) hand, allowing me to write and type again without pain. It did take two years to get to that point though. The right side was not as successful, with pain and numbness still occurring. I have had all of the problems listed by other people on this website, and discovered others as I have grown older. One of the big issues was not being able to write fast enough to complete exams. It is amazing what both schools and universities will allow if you can appeal (I now use a laptop for all of my exams and am given additional time to complete them). When I was four the kindy teacher noticed that I held things like scissors in an odd way. Back then all that was available was an x-ray. Surgery wasn't an option; it still isn't really. It wasn't until I reached high school that I wanted to do more about it. We went to our GP, got a referral to an orthopedic surgeon and another referral to Dr Steve Andrews in Brisbane, Queensland. Dr Andrews specializes in arms; from shoulder to wrist. In the four years I saw him I had some MRI's and nerve tests, which eventually led to ulnar nerve relocation, one in grade twelve the other the following year. He is a good doctor, who very was honest with what could be achieved. I have been able to do everything I wanted. I danced, and while I failed an exam due to having bent arms, I was able to enjoy myself and do the routines like others in my class. I can write and catch a ball. Every year I told every teacher that I could not swim well, or do push-ups, and yet every year this information was lost or forgotten. It is hard to find anyone who specializes, and even now I need to go back as my tendons are seizing, making my arm bend more. I am going into third year nursing/midwifery and have already encountered discrimination and bullying in the workplace, due to the odd way I hold a syringe or hand something to someone. I had to do additional physical testing to get into the course; of which I passed, and yet this information was not passed to the teaching hospital. It makes it hard when I know I can do the task, and people point it out that it looks different; well, thanks captain obvious! My only worry now is that my arms are bending, due to the tendons, I wonder how long I can continue working, even with being able to adjust. Hopefully, someone will make a brace or surgical option that will actually work, because it appears there are quite a few of us out there! Thanks for the massage tips; I have pain from the shoulders down, in both arms, and have been wondering if massage was effective/ safe. I think I will give it a go now.
I also intend on buying a wide-opening coin purse, as this is a bit more practical (yet just as good) as a cup. For the lady with the four month old son, treat him as any other child. You have the advantage of discovering it so young! I never crawled, but I can skip fine now. Treat him as if his arms were "normal", but be prepared for other peoples ignorance, over and over again. Writing slopes won't be useful; after all, how many of those are in everyday society. Pencils grips shaped like a triangle are useful for when he learns to write. I have neater handwriting than my brother who is normal arms; so don't worry! Physio may help a bit, but they are stumped; even the x-ray technicians can't understand why your arm "won't go flat". If he only use specialty items at home, then it will be harder in everyday life. So just let him discover his own technique with what others already use. Tell all of his teachers, but let him decide who he tells. I went through a stage where I told everyone, but then a couple of years later, I wanted no-one to know. I can play multiple musical instruments, my only limitation was the violin (mum wasn't too concerned) and eventually guitar, as my arm bent beyond the reach of the top string (though I am now determined to try playing " over the top" like was suggested earlier). I can canoe, abseil and rock-climb. It is harder, I will admit, and canes like heck sometimes, but I wanted to try it, and nothing was going to stop me. There will be times when it sucks, really, really bad. Be prepared for him to sit and pop his arm back in, seriously, it doesn't actually hurt; it feels much better afterwards! My brother has a similar version of this condition, but not as serious. He is a strong mechanic, a really good bowler for cricket due to his locking elbow and an amazing arm wrestler! He played soccer, golf, footy. I danced and swam. Basically, if your son is dedicated enough, he can still do sport the same as any other kid. I am twenty and this is the first time I have even heard of other people with this condition; so don't be surprised if no-one can help medically. It is probably lucky that he is so young; maybe by the time he is my age he can have surgery, and at least look up on the internet to learn more. Please keep updating everyone; I don't think other people can really understand, so it is nice to compare what we can't, but most importantly, can do.
Both my kids (ages 4 and almost 6) have been diagnosed with bilateral congenital radial ulnar synostosis. My oldest was diagnosed around age 2.5 when I commented to his pediatrician that he wasn't very flexible as she handed him a sticker and he didn't turn his hand over to receive it. He never crawled on his hands as a baby, always army crawled everywhere! Both boys have unusual fat rolls about 3/4 of the way up their forearms. My youngest was diagnosed between the age of 6-9 months after I realized he had the same fat roll as his brother. My youngest also has a rare genetic disease called Tuberous Sclerosis Complex, Radial-Ulnar Synostosis is the least of our worries with him. We have no family history of any of this. My oldest compensates a lot with extra shoulder/wrist mobility and back handing things. He doesn't let it stop him from doing anything. We've meet with genetics several times and they've put the boys thru a ton of testing with no answers. Anyone else out there have affected children but no family history??
Yes I have an affected five year old son with no family history
Hi Laura,
My son has radial ulna syntosis in his left arm and my husband has it in both arms although to a lesser degree than my son. Apart from that connection, no one else in the family has any history of it at all – not even back a few generations. Weird, but as you say they do adapt and manager very well.
I am 26 with congenital, bilateral radioulnar synostosis. I can't say that my condition has impaired me all that much in my life thus far. Sure there are sports and activities that I can't partake in, but I find many others that I am more than capable of performing. I would say THE BIGGEST problem for me is being so self conscious of my condition. I always wear long sleeve shirts if I can. When it is extremely hot and I need to wear short sleeves I always try and hide my elbows from people's line of sight. It can be pretty mentally exhausting. I feel like this has made me very insecure with life in general. Tough stuff for sure. I'm definitely worried about how things are gonna be 30 years from now. Anyways, any chance there is anyone with this condition that lives in California? I go between central and southern Cali quite a bit and would love to meet someone. I think it might help us feel better about our condition to meet others.
My 27 year old daughter has congenital bilateral radial ulnar synostosis, she was diagnosed when she was about 1 1/2 years old. Like someone else mentioned, I would get ticked because everytime I handed her M&M's they would drop right to the floor. (I know I shouldn't have been giving her M&M's so young). I worked in the medical field and told one of the orthopedic docs about this. Note: she also had problems with her hips and wore Thomas Brown shoes while sleeping. She wouldn't turn over and had problems with crawling until about 2 weeks after wearing the shoes with the bar holding her feet right. Then she just started rolling over and crawling. She started walking at 9 months of age also. Anyway, she has trouble getting the top of her hair washed, she holds her plate on the top of her left hand, she does a pretty good job of putting her make-up on, and holds children different than I do. She has taken a good share of kidding, she's a great sport about it! When she was about 5 I took her to a pediatric orthopedic doc, and he said he would cut both bones (radius and ulna) in two and reposition them with her palms up. His reasoning was, "Children in China who have this condition are then able to hold their bowls of rice." I said, "Well that's great! WE DON'T LIVE IN CHINA!!!! Needless to say, WE NEVER WENT BACK TO HIM!!! Our family has always let her do whatever she wanted to try to do, we did not give her any slack because she would use that "My arms are different, so I can't do it" attitude. She learned early on to compensate and go on. She is unique and we love her just the same as our other children! My mother summed it up this way: "She can do all things through Christ who strengthens her." She did miss out on some activities, but that was on her, we didn't tell her she couldn't, we told her she COULD! I am so glad that we didn't let anyone do surgery on her. I have heard horror stories of people with such hope then have horrible outcomes, they were better off than before they had surgery. God Bless!
Hi everyone,
I also had no idea this was a defined condition. I have it in my left arm and it's slight compared to most of what I'm reading but it's super obvious with the palm up test. People are amazed that I can't turn my hand any further. I was never diagnosed and only really took notice in my mid-20's as I tried to learn guitar. I'm 33 now and have switched to playing left-handed (what a trip!). Funny thing is that I actually am left-handed, but people know me as being very ambidextrous. In retrospect, I think without being aware, I just switched hands for some things because it was uncomfortable with my left along with it being a right-handed world. I hold a fork, use scissors, and do fiddly things (pick up keys, use certain tools) with my right. I first remember noticing something was off when I was 14 and doing curls with weights – I thought it was funny how the weight was naturally crooked in my hand. Recently I bought a pull-up bar and was trying to do them underhand. Afterward I noticed pain in my elbow and shoulder and decided to research again. I had looked in the past for "can't turn my arm", but finally found good information by searching for "can't turn my hand palm up". It's good to know I'm not crazy and I feel blessed that it hasn't been worse for me. I too find massage helps a lot – my forearms ache sometimes, but I am a drummer and mostly assumed the pain to be from that.
Good luck to everyone – I'm also looking forward to a day when something can be done! God bless
my son is cooler than all your kids just kidding my son also has problems walking because of his spine he is getting surgery in june
Hi, I have a son that was 15 months old when he was diagnosed with this condition. He was a twin but the other one died at 5 weeks. I would really love it if I have met someone in Ontario, Canada with the same condition. So, my son will know that he isn’t the only one in the world with this condition. Now, he is 3 yrs old will b 4 in October. He will be going to JK this September 2012 and now I have to explain to his new teacher what he has. I am so afarid because now he tells me he has sore elbows and arms and now headaches, which I dont know if that comes with the terriory. I have consider the operation on his left arm only but is seeking for a second opinon. Even if I have to travel to the states I would do it.
please let me know. Thanks!!
Hello Random Community,
My 2 year old daughter has just been diagnosed with Proximal radioulnar synostosis in her left arm.
Does anyone know of any specialists in North America? No doctor in my small city has ever seen this before.
If there is anything that I can do to correct or soothe it while she is still young, I would like to know.
Surgery? Cast? Brace? Physio?
Thank you so much!
Worried Mommy
My 3 year old was diagnosed just after he turned 2 and it seems to get worse monthly! I am wondering if any of you have noticed the arm most effected is shorter and/or the hand smaller? I am starting to panick that he is growing wrong on top of everything else. I also want to know if any of you have applied for disability for this. Everyone keeps telling me to apply so that he may get medical coverage for free or low cost, but I am unsure if this falls into the SSDI category for disability.
@Barbara/Worried Mommy – I searched the web and read everything I could get my hands on when my son was diagnosed. We are seeing a Pediatric Orthopedic Surgeon from Children's Hospital – Seattle. The Surgeon told me to only use surgery as a last resort for hands with no rotation.
Hello everybody,
Just to thank you for all this posts.
I'm 30 guy, from France, and I have congenital bilateral radial ulnar synostosis.
I did a french forum about synostosis.
I don't know if exist an equivalent in english…
Au revoir
Hello, My 2 1/2 year-old was just diagnosed with Congenital RUS. I was wondering if anyone knows of a doctor in California or Nevada who has any experience with RUS. Most of the specialists out here have no experience with this diagnosis.
Thank you,
{Paula
Hi everyone,
I'm 28 and like you I was born with a fused ulna and radius, but only on my left arm. I didn't notice this until I was 10 and couldn't figure out why I couldn't hold a violin when I was attempting to learn. I was able to participate in almost every sport I tried (the exception being gymnastics). I too have problems taking change, especially at the drive thru, and holding a smart phone and texting is kind of difficult, but I really can't complain too much. My little sister was born without her left arm, and hasn't had a problem doing anything (she's a terrific photographer), then I can't really complain either. It is nice to know that there are so many of us, though!
I recently noticed my 2 year old son can’t get his hands in a palm up position. I only noticed because I was trying to turn his hands up to give him cat treats. He seems to be able to do everything else (he can high five, peek-a-boo, use utensils, crawled fine, etc.) but he does have a strange fat roll on his forearms (he’s a skinny kid) that his twin brother doesn’t have. I took him to the pediatrician who had never seen it before and the pediatrician referred me to a pediatric orthopedic surgeon. I’m wondering if this isn’t what’s going on with him. I’m very concerned so any insight people may have would be appreciated.
I’m so glad to find out that im not the only person with this deformity . I am 14 years old and over the past years i’v always wondered why me. why do i have to be the only person that’s not normal and up until now i hated my life . It just feels a little soothing to know that im not alone.
My 27 year old daughter has this disability. We sought treatment when she was little, like many others, when the good ol' M&M's feel through her hands. We chose to do nothing after a surgeon wanted to cut the bones and reposition them with her palms up. His reasoning was she would be able to hold a bowl of rice, if she lived in China. WE LIVE IN MISSOURI!!! Anyway, I found something very interesting today. She broke her ankle on Thursday, had surgery on Friday and was sent home with a wheelchair. Now, upon trying to obtain a Knee Board Walker, I was met with the "Insurance will not pay for this kind of walker" even though she has this deformity. Here comes the interesting thing. I called one of the durable medical equipment companies and discussed this issue with them at some length. When I told them she has Congenital Bilateral Radioulnar Synostosis, the person looked up the diagnosis for coding procedures. She said it pulled up this diagnosis: OSTEODYSTOPHY. So I began the google search and to my great surprise, I found that it also deals with renal problems. And yes, my daughter also has some kidney issues. So to all you out there, consider putting all the pieces of your loved ones together, no matter how minute you might think they are and just see what you discover. If a physician had taken the time to consider all her issues and put the pieces of her puzzle together, who knows what might have been done for her. I am not saying it is her physician's fault by any means. I just am finding it extremely interesting about her particular condition. I am just in the beginning of this new journey so I don't know all about this OSTEODYSTOPHY. But this gives us something else to look into on our "One day at a time" journey. Just another note: A place in North Kansas City, came to our rescue with a Knee Board Walker that we can use for a minimal fee compared to the rental or buy it yourself ways we were headed for.
Hi Kathy, Thank you for sharing your story. After my daughter was diagnosed 8 yrs ago, we felt so alone, as we were told this is a very rare deformity. I haven’t look for more info in a long time, and it is so refreshing to hear about the experience of others. I have a healthy and vibrant 8 yr old daughter with Congenital Bilateral Radioulnar Synostosis. She was diagnosed at 2 weeks old when the dr couldn’t get her arms to move from their pronated fixed position. We were devastated to hear the drs list all the functional limitations she would face and the lack of any successful surgery correction options. God saw to it that her right (dominant) arm would only be 40 degrees pronated, while her left arm has a more troubling hyperpronation of 100 degrees (with her arm at her side, the back of her hand touches her leg) and a dislocated radial head (anterior & laterally). When she was a baby, we saw ped ortho specialists at Mayo who suggested possible surgery on her left arm to turn it to a more neutral position with the palm facing down for when she was older for typing, etc. There were a number of traumatic risks from surgery that we felt were worse than the condition itself, so we opted not to do it. Up until now, we were glad that we left it alone, as our daughter has adapted so well to doing things “her own way”. That, and she never once complained or made an excuse about her condition. But recently she has mentioned having shoulder & elbow pain, and numbness in fingers. I am concerned that the over-compensating in her shoulders & wrists is causing other areas to become stressed, and if things are starting to hurt at 8, what will it be like at 12, 18, etc? I’m wondering if anyone has gone through the derotational surgery to get a more functional hand position, and what the results have been? Also, Kathy, wanted to hear more on your findings on osteodystophy. You mentioned your daughter has kidney trouble. Wondering what issues she has, as my daughter still needs a pull up at night (she never had a dry night, even with limiting liquids, getting her up to go in the middle of the night etc). Thank you!
hi my son was diagnosed at 2 and his affected arm is also shorter,,, hes 4 now and we get disability for him,, i live in england so dont know if the rules are the same
I'm a 44 yr old woman with radial-ulnar synostosis. My grandfather noticed is when I was about 4 or 5 and he was trying to give me candy and I couldn't turn my palms up to take it. I was 'officially' diagnosed with fusion the proximal shaft of the fadii and ulnae, bilaterally. They didn't want to do surgery, said it might affect the used of my arms, hands even more so we opted to just leave it alone. I still have the paperwork from the doctor. Wasn't until just now that I googled it to find out more all these years later. Obviously it hasn't severly affected my life or I would have looked it up sooner. I rarely remember I have it. It's not particulary noticable to anyone so it doesn't come up in conversation and I don't really think about it. I've gotten used to my limitations and do everything I need to do my way – I wash my face differently, take change in stores my own way/try to use credit or debit card now all the time which makes life easier. Hasn't stopped me from doing much in life, some sports I guess but I played piano and have done gymnastics to m best ability. It affects everyone differently. I do have a job where I type alot all day long so I occasionally have some wrist pain but that's probably true for anyone who types alot. Sometimes I feel like my wrists 'lock' for a second but other than that I can't say I've let it affect me in a negative way. I've been reading that it's hereditary. My parents and grandparents didn't seem to have it so I'm not sure who I inherited it from in my family. I don't have children so I guess I won't be passing it on to anyone else.
Hi Paula, I live in Sacramento, my son 3.5 years old also got the same situation. We found out early when he was 1.5 years old, then our pediatrician doctor referred us to
Shriners Hospitals for Children
2425 Stockton Boulevard Sacramento, CA 95817
(916) 453-2000
Since then every 6 months we have been regularly followed up there by the doctors who has some experiences with this issue. When the children are still young, they don't recommend any surgery and just monitor the bone development to make sure it's healthy and not bend. Later when they grown up, surgery is an option. But my wife and I are keep praying and let our son be able to adjust his daily activity with a work around. I hope this information helps. Thanks all for sharing as well on this forum. I am so glad that my son is not the only one with this issue.
I have this birth defect in both arms an have passed down this defect to my son. He has it in his left arm but more severe. He struggles alot more with simple fine motor tasks like holding his fork or even writing. We are constanty workig wth him. This site was really helpful. Thank you.
Hello All, Just found this site as I am taking 16 year old to doctors this afternoon. Believe he has Congenital Radiaulnar Synostosis. It's something that he has brought to my attention, as I must admit I've never noticed he had a problem. As a baby he didn't bother with the crawling stage, he just got up and walked at nine months old, so I didn't have the opportunity to see him crawl.
His blindness in one eye was what always worried me.
This condition has never stopped him doing anything, although I guess it could be the reason he was not keen on continuing Guitar lessons.
I am taking him to the doctors just to check that he is suffering from this condition and to confirm that there is not another unknown underlying condition causing his problem.
But what I cannot get over is the fact that a) I never noticed and b) that he only pointed it out to me just before Christmas.
My second child, who is now 8 was diagnosiswd with left congenital radial ulnar synostosis with dislocation at 2 weeks if age. At the time we were living in St. Louis and were told nothing could be done. 3 years ago we moved to Texas. I happend to be taking care of an orthopedic surgeons wife one night at work. When I told him about my daughter he go excited because it is so rare. He said I would love to see her but don’t you realize the people who wrote the book for congenital pediatric orthopedic conditions are just in Dallas at Texas Scottish Rite? I wrote them and my daughter was excepted. Her surgeon Dr. Ezaki was an angel that went to Havard. They made bone paste out of My daughter’s bone and reset her hand into a functional position. They couldn’t fix her arm at her elbow because the risk was too great. The surgery overall was life changing. She can ride a bike, do monkey bars, clap her hands, and even play a guitar left handed. One her wedding day when her ring is facing the right way I will think of Dr. Ezaki. Everything Texas Scottish Rite did for my daughter was completely free to us. They run on donations. They sometimes will even take our of state children. I forget all the time now that she has any limitations.
Hi Heather, Thanks for sharing your story. What a blessing that your daughter is doing so well after surgery. It is encouraging to hear of her success. Could you share at what degree your daughter’s arm was at before the surgery, and then where it was positioned after the surgery? We have been holding off getting our daughter’s RUS operated on because of the risks associated with trying to get her left dislocated hyperpronated (100 degrees) arm in a more useable position. (Her right arm is also pronated at 40 degrees). She’s now 9 and has adapted well considering the circumstances. Recently she’s been complaining of shoulder & neck pain, which I’m sure is due to the over compensating of her shoulders.
Hi, My husband has congenital radioulnar synostosis to his both hands and his mother has it to her left hand. Also one of his paternal uncle has this problem. We are worried that it would pass it to our children. Is there any 1 who faced such issue. Are the chances of passing it to them high? can it be controlled before pregnancy?
I am a 53 yr old woman born with this condition in both arms. Iwas bullied mercilessly all through secondary school and have struggled all my life to do simple things that people with “normal” hands find easy. I have recently started to get a lot of pain in my arms and have trouble gripping things..went to my doctor and he knew nothing about this condition so is sending me for x rays. I decided to do some research on the net and was so happy to find this site. I have always felt so alone and was the only one like this. I would love to hear from others who have had the same experiences. Not a lot seems to be known about it here in the uk..IT also had heart valve replacement last year and was surprised to read that it could be connected in some way.Thankyou all for posting here..for the first time in my life I don’t feel so alone