Congenital Radioulnar Synostosis
April 24, 2008 by Dr Arun Pal Singh
Filed under Pediatric Disorders
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 glenohumoral 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.
Related posts:
- Congenital Dislocation of The Radial Head
- Congenital Dislocation Of The Shoulder
- Congenital Muscular Torticollis-Etiology Pathology and Clinical Findings
- Congenital Clasped Thumb
- Congenital Muscular Torticollis-Diagnosis and Treatment
I have this bone deformity. Almost every day can be a pain in the rear in, as in the saying not literally. I can, strangly pull of sign language pretty good though. I have lived with this bone deformity for as long as 15 to almost 16 years. And that is how old I am. It also feels like Arthritis, and that is pretty much what the ending result could be.
I am 39 now… my mother discovered the limited motion in my arms at 10. You must adapt to everything. The worst is trying to get your change at the store…thank god for the debit card. My forearms are shorter than my upper arm…i didnt notice it until other people told me. I try my best to hide it with long sleeves. people dont notice right away but after a while they do and I notice the looks and people talking. I guess im lucky…at least i have both arms and hands and i dont have any pain. I dont know exactly how severe i have it, i cant rotate my left forearm at all and about half way with my right. I hope to get some emails from others with this condition.
I am 16 years old.My mom realised this bone deformity when i was 2 years old. I went to a bone specialist and it was then that i was diagnosed with congenital radioulnar synostosis. Prensently, I have about 90 degrees of turn in my righrt hand and about 45 degrees in my left hand. At age 11 i did a corrective surgery that was SLIGHTLY successful. After the surgery i was able to turn my right palm upwards only if i turned the entire arm, from my shoulder joint. Since the surgery i have been experiencing serious pain when i do strenuous work,too much writing or believe it or not whenever i flex my right arm( the one that hurts the most) too much. Yea, sometimes it does feel like arthritis and i can relate to John Lawrence, accepting my change from the canteen at my high school was really embarrassing at times.Its even more embarrassing trying to count siver money in my hand before paying for an item. Having this defect can be really distressing to me,especially when i have lots of homework to do! I would also like to get in touch with other persons with this condition.
I was told I was unique.It now appears that I am not alone.I am now 66 and am increasingly worried that arthritis will now make this conditition very painful.It is fantastic to discover that there are others out there who know all the problems you get with this.My parents took me to a famous healer when I was 3,who so say cured me of a dislocated shoulder and probably charged a fortune.This quack lived in a tumbledown house just outside Wadebridge in Cornwall.The house is still there but next to it is a very luxurious one so he must have made a fortune from his quackery!!
Everyone who has this will find that if you are for instance right-handed,you will be able to turn that hand a bit more but it is all from the shoulder.I would say to everyone that whilst this conditition is often very inconvenient,there are a lot of people who are much worse off and there are usually solutions to our difficulties.From what I have seen on the net,surgery is not a good idea.
Hi,
I’m Val and am now 53. I too have this condition in both arms and have only today 13th September, 2008, found out the name of my condition – hurrah for the internet! When I was 8 years old, surgery was suggested to correct the fusion, but as the surgeon only offered a 50/50 chance of success, my father would not let me have surgery claiming I was coping well in my own way. In my 20’s another surgeon said that my father had made the right decision as more than likely the bones would grow back again.
Up until now, the condition has never stopped me from doing anything I wanted to do. I learned from an early age to have the right money for everything and when I serve tea, I get lots of help carrying as people think I’m going to scald them! My daughter calls me ‘Spastic’ – it’s a term of affection!
I think the way I adapted was to try to excel in other ways. As I could not play hockey – I couldn’t hold the stick – or play the guitar or flute – I worked hard at school and did well academically. I find that the piano is easier to play as you don’t have to rotate the wrist to play it. I have worked as a teacher for 25 years and for the last 6 years I have been self-employed. I own a craft shop – believe it or not – and run classes on card making and jewellery making. I reckon that if I can do it, then anyone can.
I now find my condition has got worse from the point of view of arm and shoulder pain. I use my shoulders as rotation joints and in June my left shoulder partially dislocated after trying to lift some heavy boxes. The pain was dreadful as my arm went into spasms and I was totally incapacitated for about 4 weeks. I now attend a chiropractor to help with body alignment and pain.
Up until now, I have never considered myself disabled. I have always focused on my abilities but now I’d be glad to receive a bit of help. I find driving difficult now as changing gear and releasing the handbrake are painful for me. I find my arms, shoulders and back sore particularly after physical activity like trying to fill a kettle, doing some ironing or even emptying the dishwasher.
It’s only since the pain has started that I began trying to get some answers as the condition seems quite rare although I’ve noticed that the condition can also be found in Thalydamide victims.
I’m delighted to have found others with the condition.
Hi. I am 20 and I have this also. I go to school at George Mason University. Please email me so we can chat if you have this also.
Doug
Hello! My name is Mindi. I have a 5 year old daughter, Lizzy, who has this defect. She just started kindergarten this year and we are having a tough time with her writing. I feel so bad for her. We started with an occupational therapist this week. I am hoping we can find some sort of tool or adaptor to put on her pencils to help her. On top of this, she is left handed. She is actually ambidextrous! She can use both hands equally well but prefers her left hand. And she is very intelligent so my heart is aching for her right now. If anyone has any input I would be so happy!
Hi,
I am glad to have found a few others who have this condition and to hear what your experiences have been. My 23 month old son Owen has been diagnosed with this condition. It was discovered after a nurse had trouble turning his arms for a blood draw. I brought this up to our pediatrician and he just said some are more flexible than others. Luckily we persisted and were able to get a consult with a pediatric orthopedic doctor and it was diagnosed through x-ray. He has it bilaterally. I am unsure of his degrees of pronation and we are getting a second opinion next month. Our first doctor recommended waiting until he is older and then assessing his functional limitations before considering surgery. The doctor also mentioned that many occupations are computer oriented and we do not want to do anything that may make typing more difficult.
I have been having a hard time finding good information on this condition and on others experiences in living with this, and the functional challenges it holds. From what I have read surgery isn’t a great option, but I would be very interested in hearing from someone who has had the surgery.
After doing research I found an article that suggested testing for heart and kidney abnormalities as these often accompany radio-ulnar synostosis. I asked that my son be tested even though we had seen no evidence of any problems (no murmer, no shortness of breath, urinary issues). Am I glad I did because we found out that he also has a congenital heart defect (bicuspid aortic valve) and a possible kidney problem. We are waiting to see a nephrologist to confirm the kidney issue. Please consider seeing a cardiologist and get a renal ultra sound if you or your child has this. Problems such as bicuspid aortic valve are often not diagnosed until they cause problems later in life, but it is certainly good to know about so you can monitor it. My son also has a Chiari Malformation.
It is also interesting to note that we have come to find out my husband’s grandmother also had this condition. Does anyone else know of a family member who has it? We are seeing a geneticist to try an determine how these problems have been passed on and if there is some syndrome going on. Do any of you know of other medical issues you may have? The geneticist says my son does not fit any she is aware of, especially since he is developmentally normal.
I have included a link to Owen’s caring bridge site, which gives updates on his issues. Please email me if you would like to talk more, I am very interested in hearing others stories. I would also be interested in possibly forming a yahoo groups page for those with the condition. It is great to have a message board to share experiences.
Liz
My son was diagnosed with congenital radioulnar synostosis in his left arm at the age of 6. He is currently 21-years-old. Luckily his left arm is in the “neutral” position, so holding items, dressing, etc are possible because he simply turns the arm at the shoulder. He is right hand dominant. The condition has not impaired his life to cause him any real anxiety. For those parents who are worried about this affecting their sons/daughters ability to participate in sports; My son excelled at sports. He was an All-American football player in high school and college. He was a first seed wrestler in California high school wrestling for three years and won the championship for his weight three years running. He was an alternate to the California State Wrestling Championship. Because of the congenital radioulnar synostosis, he actually cracked his radius head during a match. What I’m getting at is when he was diagnosed my wife and I thought he would not be able to participate in the activities young boys gravitate to and would be on the outside looking in. That simply was not the case. I think he was determined not to let the diagnosis get the better of him, nor should your son or daughter.
Hi, I am in my 20s and I also have radioulnar synostosis. I was diagnosed when I was five and for the most part I have grown to live with this defect. I have pretty much full movement and rotation in my right arm, but I can hardly turn my left arm. It looks like it has gotten worse as time progresses. I find this defect difficult for me because I am left-handed. So I have to learn to be ambidexterous in many situations. I have a lot of pain in my left elbow joint and it feels like there is a lot of pressure that builds n my elbow joint when I am doing a lot of handwriting. It is nice to find others that have the same defect. I have never met anyone with the same problem. I feel very awkward in my movements, from getting change when I make a cash purchase, trying to open my car door, using eating utensils (I have to hold them like a child does), and lifting heavy boxes is quite interesting (supporting weight with my arm pronated hurts a great deal). Surprisingly, most people don’t notice my defect, but I have had some ignorant individuals poke fun at me, not realizing that I have a difficult time doing everyday activities. It is amazing that I am left-handed considering that my right arm has full range of motion. I have looked into surgery, but there seem to be more risks than rewards. We should all embrace our uniqueness eventhough it can be upsetting to deal with at times. I suppose things could be worse, but it feels good to know that others have the same problem, and I am not alone.
I have been following this site, hoping that more people post here. I have been doing a lot of research into this condition and have found some information on other potential surgical options than rotational osteotomy. You may want to read the following journal articles if you are looking for more information. These techniques have been shown to allow pronation and supination.
Mobilization of a Congenital Proximal Radioulnar Synostosis with Use of a Free Vascularized Fascio-Fat Graft
Treatment of radioulnar synostosis by radical excision and interposition of a radial forearm adipofascial flap.
The first is a study out of Japan but the second was done in California. I contacted the doctor responsible for the study and he gave me the following information:
“The conventional treatment for RU synostosis is a rotational osteotomy of one forearm, so one forearm is in pronation and one is in neutral or supination. I have used the radial forearm adipo-fascial flap to interpose between the radius and ulna in cases of traumatic RU synostosis and congenital synostosis. The results are better in trauma than congenital, because you still need to do an osteotomy of the radius in the congenital cases and then hopefully the flap allows pronation and supination. The radial forearm flap is faster than the lateral arm free flap used by the Japanese. If you live on the east coast, the person to see would be Joe Upton MD in Boston.”
I figured I would post in order to give some more information for those looking. I don’t know success and failure rates, but it looks like an interesting possibility for allowing pronation and supination.
Rachel- Do you know if your radial head is dislocated? Maybe that has happened and is causing you pain? From Emedicine: “Pain is usually not a presenting symptom until the teenage years, when progressive and symptomatic radial head subluxation may be noted. Children may initially have a reduced radial head and in adolescence may develop symptomatic radial head subluxation. Therefore, radiographic follow-up is necessary.”
It is so inspiring to see you guys sharing your problems and solutions. Because all of you are looking for a place to connect, I am thinking of doing something for that.
You see, we are process of creating a forum on our website. We can have a subforum on Radio-Ulnar Synostosis as well.
That would provide you the best opprtunity to share your thoughts and interact with others.
It would take some time to take effect.
Would you like to have one?
Great to see all these responses and yes Dr Singh,I am sure that everyone would welcome a forum.I have recently had a X-ray to see if anything else was happening to my elbows and this itself was very painful getting into the correct position.
Like others I have not learnt to drive but whether or not this is down to self confidence I don’t know but I do drive a large motorbike/scooter without any problems.
One delicate point which nobody has mentioned is the difficulty wiping ones bum having been to the toilet which would be nigh on impossible if I was left handed.
I was never allowed to play sports at school although I rowed,swam and did a bit of weight lifting,so I left school not being able to catch a ball.It was only later that I learnt that I could play volleyball reasonably well although I had to do it my own way.I also learnt to play a variation of tennis called miniten which uses something like a wooden glove but again I adapt my playing to cope with the problem.
I have recently started yoga lessons and it surprising the number of times one is required to rotate ones palms and certain positions are just too painful but you learn to cope.
I would be very keen to speak or correspond with any one.
Dr. Singh, that would be great! It’s hard to find a whole lot of information on this condition, and I’m sure it would be helpful to many people.
hi everyone,
so glad i found this site. I have recently discovered that i have proximal radioulnar synostosis, which explains a lot problems i have encountered over the years (im 22) Unfortunatly this condition seems unheard of in Ireland so i cant get any information or help from orthopedics. I suffer from a lot of pain which often spreads into my shoulder and back.. Does anyone else have any similar complaints?
Teresa
I posted a message a while ago asking any of you who have the condition, as I do, to email me to chat. I forgot to include my email. I am a 20 year old college student. Please email me
hiya.
my son aged 4 has this problem we found out when he couldnt crawl properly, he was always doing a commando crawl. he cant actually straighten his arms , nor put his palms skywards. he has a wonderful consultant he adviced me not to read to much into it as i might panic, that was about a year ago and now i feel like i do want to read about it with out me getting paniced!
its hard when its your child as you want them to be perfect but we find it interesting how ollie adapts to things, like holding your hand he will hold your finger or feeding animals (which he cant) he gets a bowl so the animals can eat from that. i think i find it harder than he does. he says he has silly arms, and he does say it hurts in both arms, does anyone else suffer with the pain and if so what do you do to sooth it??
my other concern is that ollie runs like a duck feet outwards, does anyone know can it be in other bones too?? i think this site is fab its a shame we cant get a site together….or a group!
thanks for reading
sarah
Hi Everyone,
I am no expert in all of this, but I have started a radial-ulnar synostosis yahoo group where we can share information and support. Please come on over and join so we can get started! Here’s the link:
http://health.groups.yahoo.com/group/radial-ulnar/
hi
im 14 years old and i have Radiolulna Synostosis. My parents found out when i was 2 years old. Life’s been hard for me especially with sports. I wanted to do gymnastics but my arms don’t turn properly. I have it in both of my arms. It’s hard but i believe that we can all get through this together with our families and friends by our sides!!!!!
brianna <3
@Liz,
Congratulations on starting a group. That is a great way of sharing knowledge.
@All,
We have a forum in place now. I know it got delayed after I first mentioned it but I could not find time to carry out the sequence of events for this.
This forum would cover musculoskeletal health in all possible aspects.
We have a section devoted to Radio Ulnar Synostosis under forum Pediatric Disorders.
You are all welcome to gather and generate discussions.
We would be watching over the discussions to avoid the dilution and side tracking.
I look forward to see you people there.
Here is the link
http://boneandspine.com/forum
Arun Pal Singh
P.S. Because it has just started, the forum appears very raw and inactive. DO not get disappointed with that. Your activity would enliven it
Hello,
My son is having X-rays tomorrow for this condition, he is now 16 but we only really noticed that it cannot atraighten his arms fully (and that his shoulders look very strange if he tries to, coming foward a great deal) when he had cellulitus in both elbows recently.
He also has been diagnosed with noctournal epilepsy (all types of seizures) dyspraxia, moderate learning difficulties, autistic spectrum, (possibly aspergers) and gastro-oesphagal reflux disease (for which he needs an operation soon)
I have always wondered if he had some sort of rare syndrome as he also has a palmar crease in his hand. When they found this at four they did all sorts of genetic and chromosone testing but found nothing and told me he is a ‘grey area’ child with a little bit of a lot of things! He has very poor social skills too.
I have seen on the net something I hate the name of but it is radioulnar synostosis mental retardation and my son has so many of the symptoms of this, like the large head, speech difficulty, tooth decay for no reason (like they grew through already rotten. Plus he cannot tolerate much in the way of either milk or gluten.
He cannot use knife/fork do buttons, use a key to open the door, use a screwdriver, peel potatoes etc and he also has a strange gait. Walks a bit funny, clumsy and had to have special shoes as his foot turned in.
I realise what he has must be pretty rare as most of you seem to just have the radioulnar but wondered if anyone else out there has anything similar?
I have a great consultant who when I told him on the phone my son could not straighten his arms he referred him for x-rays without question and these are tomorrow.
He did have a heart scan (like a pregnancy scan type) at a young age as they thought they could hear a murmur but it was normal, going to push for more tests though re heart and kidneys.
Please let me know if you are similar in anyway or have a similar child.
Thanks
Kate.
Hello,
Since I was about twelve years old, a friend pointed out to me
that one of my elbows looked different. My right elbow stuck out about an inch and my left was less pronounced. I became self conscious
and proceeded to not ever go to the beach or swim or wear short sleeve shirts. I saw a doctor
and he said there was nothing wrong, seeing that I was in no pain, so there was nothing to do.Thirty years later I visited a bone specialist and he said he could literally saw off the part of the bone that was sticking out. I have limited motion in both arms, as far as turning them outwards, but I could live with that. Since the surgeries, my arms look normal enough where I can now go to the beach, wear short sleeve shirts and finally feel free again. I’ve had no pain since either surgery, which was about twelve years ago.
hi my name is Joe i am 21 i was diagnosed when i was 10 years old i have congenital radial ulnar synostosis in both my arms. life is really hard. i don’t like going anywhere because when i go to a store or something and i get the change i can’t get the change right. i go through a drive through place and they give me the money like you normally get it and it falls to the ground then the person just says im sorry. its a loss. i can’ change the oil in my truck, or do any customizations nor fix it. i can’t get a job because i can’t carry the plates and things. i really get really desperate that i try to forcebly twist my arm until it hurts because this really sucks. i can’t even open the hood of my vehicle it is very painful. people laugh. i want to go to college but i can’t carry the books. i want a job but can’t get one.
I am 28 years old and also have this condtiton. I never knew this many people had it as well. I discovered it when I was in 3rd grade and couldn’t play “head, shoulders, knees and toes” like everyone else in my class. I couldn’t touch my right hand to my shoulder. My mother of course thought I had made the whole thing up when I started eating with my left hand, as she thought I was just copying my friends. It is pretty funny to watch me try to eat with my right hand. At 14 I went to the doctor and had an x-ray taken which showed that my ulna and radius are fused at the top of my arm. I’ve never really thought about it until it totally gets in my way. I could never really serve the volleyball correctly and it prevented me from going any further in gymnastics as I could not do a proper cart-wheel. I could still play the clarinet though for four years in school. I have noticed recently that it has started hurting in my job. I work in manufacturing and am constantly have to tighten clamps. I notice my self using my entire arm and using my shoulder to rotate the clamp. I know in the long run that could be a problem. I was planning on going to school to be a court reporter, but am not sure if this could potentially be a problem for me. Is there anyone out there who has this condition and types a lot in their profession. If so, a little advice would be very helpful. Overall, this hasn’t really affected my life, but I am concerned for later on in life it will become a problem. I’m so glad to know that I’m not the only one going through life like this.
at my elbow my 2 bones are fused together and i cant straighten my arms and i can’t do gymnastics(iv’e always wanted to), and i can’t do cartwheels while my best friends does them all of the time and she is in gymnastics and i can’t play volleyball bbecause it hurts too much!! I am 15 now and im never getting a treatment or going into surgery because it dosen’t work most of the time and i don’t want to take a chance after i have already lost my mom in rhe hospital. ADVICE: don’t get surgery!!!!!
brianna
My 9 year old son was born w/ Hypoplastic left heart syndrome We noticed when he was 4 years old that both of his arms and wrists did not turn up. I have taken him to therapists over the last five years and nothing. On June 2, 2009 , I took my son son to see a Orthopedic surgeon and was referred to see a Pediatric Orthopedic surgeon. I was just informed today my son has congenital radio-ulnar synostosis.
A congental malformation(birth defect/present at birth). The two forearm bones fused together. The doctor said it is a congeital dislocation of the radial head, which is a rare condition, and may have had something to do with my son being born with half of a heart.
My son may not be able to do alot w/his arms, but He can do hand stands and freestyle very well.
I was told there is nothing they can do to fix this. The teachers wll just have to deal w/ the sloppy had writing.
I GUESS HE IS JUST A RARE KID AND IM LUCKY TO HAVE HIM…
I also have this congenital deformity, but have never been properly diagnosed. When I was 2 years old my parents discovered I couldn’t rotate my left wrist to pick up a ball properly and had very defensive comments from my then doctor. As I was growing up I found this incredibly painful. It would keep me awake at night, and felt like intense burning in my wrist. This pain subsided once I was fully grown and now as an adult I barely notice my condition. I seem to be able to do more now than I could growing up.
The worst things as a child (apart from the pain), was not being able to play certain musical instruments or some sports.
During my childhood, I was in and out of surgeon’s offices who thought that it was most peculiar and couldn’t really explain it. They did want to operate and separate the bones, but we weren’t keen to go ahead as there had been no successful surgeries at the time, and bones would normally grow back together again.
I am lucky to only have it in one arm. But I would love to know more, and the possibility of me giving this to my future children, and more on complications which could be related to this.
My son has the same problem, I was just serching why can’t he turn up his hands when finally I found the answer. He got physial therapy since he was half year old, because born with torticollis, than his fine motor skills just was no good, than he did not talk at all at age 3, and was really hard to deal with…so he went to special ed. kindergarden. Get occupational terapy, and old kind of specialists. The best of the whole thing, never nobody noticed the problem, or at least did not mentioned to me, until recenly at age 5, when we moved from the USA to Hungary, and our new doctor noticed right away, and asked if I knew he had this problem….and yes I noticed too not that long ago, I just didn’t know that it’s a problem. Of course now we starting to have difficulties, he’s left handed, and his left hand what he can not turn up at all, the right not as bad, but does not turn ap much more, also on his left hand the litle finger is bended, we just call it the crazy finger, and his 5. toe on the 4. on both feet, other than that he looks just perfect, really cute kid.
Just this may my son had an accident, so he had to have ultrasound for his belly, when we find out his kidney in the lower abdomen, and he has only one or a fused one….so yes it can be with other problem, and he could live with one kidney forever never knowing it, since it does not cause any problem. Good we find out, because he’s a very active boy, already diagnosed with ADHD, really hiperactive, and possibly in the autistic sprectum.
My ten year old daughter has a %30 fusion (bilateral) which my wife noticed at around 1.5 years of age. Took us almost six months to get a diagnosis but after a complete set of x-rays we finally had our answer. There really is not much she cannot do but learning to write was a bit of a challenge for her and remains so today. The hand position is just so awkward for her that she tires and has pain very quickly.
We have just been contacted by the hospital that diagnosed her that they are conducting a study of people with this condition and they would like her to be part of it, which we are going to do. I think if they can learn something from her to help someone down the road it’s worth it
She is reaching an age where the kids around her notice that she does some things differently, and that’s actually more of a problem than the condition itself. If you have a child with this condition (especially a girl!) I think it’s really important to make them understand early on that this isn’t something they should try to hide or be ashamed of…we try to make light of it and have a little bit of harmless fun with it so she doesn’t get too worked up about it.
Best wishes for all dealing with this!
I am 48 years old and have this condition in both arms. In my case it is hereditary as my father and his brother both have the condition in different levels of severity. I was properly diagnosed when I was 5. My parents split when I was 4 so I never had the opportunity to question my father about his condition and he has since passed away. I had surgery at 5 to try and split the fusion in my left arm which was not successful. The fusion repaired itself. I was casted for several months therefore had to learn to eat and write with my right hand. I am naturally left handed. This condition has not stopped me from living a normal life. As others have stated the only time it is truly noticable is when I get change (most times I have them put it down so I can pick it up), holding utensils (only noticable if someone is really paying atttention to what you are doing) and carrying large objects that would normally require the palm up position. There are many other small adjustments I have made but even I dont realize that I am not doing something the “normal” way many times because I have just naturally adapted. My father had a black belt in Karate and I am a pretty good dart player (the locked arm position is great for control). Of course, I will never be a champion tennis player but one needs talent for that AND arms that rotate correctly. As I age I have had some issues with my left wrist and my right shoulder. In the case of my shoulder the doctor states that I am forcing the “normal” parts of my body to do things that it should not be on a regular basis. The wrist issue came about because of repetitive strain as I work on a computer all day. There is some arthritis in the left elbow but nothing that is dibilitating. There are doctors that do know about this. Normally they really have to specialize in upper extremities. Congenital radoiulnar synostosis is rare and most orthos see the injury caused version. I also have a 17 year old son and he has no form of the condition but I am curious to see if he carries the gene and one of his children have it. I am glad to see this site as I too had researched for years and just recently started to any type of info regarding this condition.
hi… im david. I am 15 and was diagnosed with congenital radioulnar synostosis at the age of 2. I had no idea how many other people had it but being that it is under 200,000 I have met no one like me. I also did not realize how awkward it is feeling that different. Taking change can be a pain but i have learned to cope with everything else. I balance plates on top of my hand and basketball is way easier. I have no pain in my arms but the are slightly curved. I can turn my hands to a vertical level but no further. My friends always bother me to get surgery but i have chosen not to. I hope to get emails from others like me about our condition.
Hello, I am very excited to find this site. I had never realized so many people are dealing with the same issue that I have lived with for over 37 years. This is hereditary as my siblings and aunts/uncles have this condition but I had never meet anyone else with it until last year. It was very interesting to speak to someone else about my problems. I have never been diagnosed by a doctor for this as in our small home town it was something that had never been heard of before. I am not able to rotate my left arm to any degree and my right has very little rotation in it. I have worked all my life and dealt with the stares and comments. I have always had to find a way to complete things that others took for granted example: curling my hair, putting on make up, playing sports, holding a baby and am limited on the jobs I will take, as I do not want to be in a job that requires me to take money or have to rotate my arms. I read that surgery is not working for many people and have not went that path; but I am thinking of consulting a doctor to see what is possible in the future. I have not had many problems with my condition until about 3 years ago….I am now experiencing pain in my wrist; not tingling but pain. But I am thankful that I am able to do things in life. If anyone every has any questions I would be more than happy to talk…
I am 66 with congenital RUS. I am concerned about long term heart, kidney and arthritic effects. Has a forum ever been started?
Thank you!
Dr Arun Pal Singh Reply:
October 9th, 2009 at 1:41 pm
@Jim Dodds,
Do you have associated heart and renal problems?
Is anyone on disability for this diagnoses? If so was it hard to get approved??….
I am a 37 year old male with bilateral radio-ulnar synostosis. I have zero supination (rotation) in either arm which means both palms are stuck facing down. I have to use my shoulder, my entire upper body, and lean to the left or right just to accept change from a cashier. Neither arm will straighten all the way. I can bend them in but I can’t straighten them all the way. I am starting to have pain in both wrists, arms, and elbows but mostly in my right arm; I think it’s because I use it more being right-handed. My doctor sent me to a arthritis doctor who said the pain was in my head. He said it was a hyper-sensitivity to pain found in my brain. It is becoming more and more difficult to function and perform small daily tasks. It’s nice to know I’m not alone. Does anyone know how many of us there are? Does anyone know of someone who specializes in this condition? Please email me if you have any answers or just want to share stories. Anyone can reach me at jownes[at]cfl[dot]rr[dot]com.
Thanks!
Oh, and check out the Yahoo sit as well!
Reply to Dr. Singh…
Haven’t been here for a while and just noticed your entry.
I have a minor heart murmur but no known kidney problesms now, though I did when I was about 4 or 5. Hmmm.
I’ve recently heard that there may be blood platelet count concerns associated with RUS. I didn’t find out there was even a name for it till I was almost 50, although I think the Army knows about it because one of the tests in my physical at age 20 was touching shoulders, which I can’t do, and I got a IVF.
My right arm is worst and I have chronic elbow and shoulder pain and concerns about arthritis. I echo all the concerns mentioned by others and add a couple: I can’t throw a football or make bar chords on a guitar, and my wife thinks I hold my spoon and fork funny, too. I live in Vermont and my wife’s orthopedist looked at me weird when I asked him about RUS.
Thank you!
Dr Arun Pal Singh Reply:
March 8th, 2010 at 12:33 pm
@Jim Dodds,
There have been few reports of associated anomalies of the limbs but I am not aware of visceral anomalies.