Hi, folks.

I'm not sure if this is going in the right area, but my brother was diagnosed with congenital radioulnar synostosis about ten years ago (he was 14 at the time). It's bilateral, and he had surgery on both arms a few years ago to remove excess bone. I crack my right elbow a lot...I can be sitting in class and just feel the need to stretch my elbow and crack it. It's not a normal crack...it's loud and sometimes painful. My left elbow doesn't do this. People always seem shocked when I crack my elbow. My mom's concerned that I may have a mild form of radioulnar synostosis. I'm not sure if it runs in families...I've read that it does, and I've read that it doesn't. My mom also mentioned that she was on some medication (not sure what it was) when she was pregnant with my brother and me. She took more of the medication when she was pregnant with my brother. Does anyone know anything about radioulnar synostosis? I know it's really rare...the first doctor my brother went to had no idea what was wrong with his arms. Any information would be helpful!

Thanks!
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First Helper mackie85
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replied December 29th, 2008
Supporter
Hi, sorry for the late reply.

The following article on eMedicine, which is a good reference that I use, could be useful:
http://emedicine.medscape.com/article/1240 467-overview

Does it happen in both arms? (bilateral cases make up 60 % of the only 350 documented cases)

As per date, I don't think we are sure of the exact aetiology because the condition is so rare. It is a congenital anomaly, so perhaps mentioning the drug to the dr might give insight towards if you have it or not.

When you turn your arm from palm facing down to up, as in turning back pages of a book, does it cause pain or the cracking sensation?
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replied December 29th, 2008
Thanks for the response! In my case, the cracking only happens in my right arm. It's hard to explain how I crack it...I bring my hand up towards my ear (palm facing my head) and then stretch it to the right so my palm is facing up...that's when the cracking occurs. Sometimes it feels like it catches and it hurts. It doesn't happen when just turning my arm from palm down to palm up though. The fact that I can even do that motion makes me think I don't have any form of radioulnar synostosis, since that's one of the main things my brother can't do from his elbow. He has to do that motion from his shoulder.

But thank you for the information and the link! I will definitely have to look more into this.
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replied January 7th, 2009
Hi,

My 24 month old son has been diagnosed with radial ulnar synostosis. We have found that it can run in families. After my son was diagnosed we found out my husband's grandmother (deceased) also had it. After doing some additional research we found that if you have been diagnosed with this you should be screened for heart and kidney problems as they can occur at the same time in fetal development that causes something to go wrong with the arms. We had my son screened and he does have a congenital heart defect, bicuspid aortic valve. He was showing no symptoms or problems because of this. After that, we decided to have my husband checked as this is coming through his family. It turns out he also has a bicuspid aortic valve and a very slight irregularity in his radius, which we found through an x-ray screening. (nothing you would ever know about, except on x-ray). You might want to have an xray done to check for any irregularities. I think I do recall reading that some drugs taken in pregnancy can cause arm irregularities. I believe it was Thalidimyde, but can't really recall.
Liz
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replied January 16th, 2013
Hi liz

Just found ths post, my ten yr old twins have the condition, my boy is struggling and I am looking for the best advice/surgeon for advice in the uk

How is our son doin and what age is he now?
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replied February 9th, 2013
Hi

My son was diagnosed when he was 2. He is now 8 and is very self conscious. We are considering surgery but it is controversial. Nerve,vascular and the bones growing back to their original state are risks. We are being evaluated at University of Californa San Francisco. Research pediatric orthopedics in the UK to have you children evaluated. Surgeries are also being done in Japan, India and elsewhere. Unfortunately surgery outcomes are not great. I remain surprised given all the advances in orthopedic surgeon surgeries.
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replied February 9th, 2013
Hi

My son was diagnosed when he was 2. He is now 8 and is very self conscious. We are considering surgery but it is controversial. Nerve,vascular and the bones growing back to their original state are risks. We are being evaluated at University of Californa San Francisco. Research pediatric orthopedics in the UK to have you children evaluated. Surgeries are also being done in Japan, India and elsewhere. Unfortunately surgery outcomes are not great. I remain surprised given all the advances in orthopedic surgeon surgeries.
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replied June 26th, 2014
We also have 10 year old twins that have this condition. Are your twins identical? We don't know if ours are but they both have the same issues but to slightly different degrees.
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replied January 7th, 2009
Oh wow! That's really interesting. Thank you for the response. I'll definitely have to talk to my mom some more and try to get the name of the medication out of her. And I may go get an x-ray just to be on the safe side.

Thanks again for the response...it was really helpful!
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replied September 3rd, 2009
I am a 65 year old female with radial-ulnar synostosis both arms, the left worse than the right. I have functioned very well during my life but now have arthritis in shoulders and hands and upper back and neck. I have compensated by using my shoulders to turn my right hand over. I have not been able to turn my left hand over. I now am having joint replacement in my left thumb due to collapse of my basal joint, I also have dupretrens contracture both hands and have had repair done on that. I wish I had oc therapy when I was younger but didn't know what I had till just recently
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replied November 13th, 2009
I have Radioulnar Synostosis. It's in my left arm, and I can't turn my palm right side up. I can with my left arm. I thought I was the only one Very Happy
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replied October 6th, 2011
I also thought I was the only one.
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replied December 29th, 2009
Radioulnar Synostosis
I am sure we all thought that we were alone and certainly when I was diagnosed with Congenital Bilateral Radioulnar Synostosis in about 1945 when I was four,the consultant said that this was unique-how wrong he was!!
I also get a loud click when the elbow resumes it's normal position after temporary "dislocating" and it is fleetingly very painful.Robin Crick UK
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replied December 30th, 2009
radioulnar synostosis
Hello FRIENDS!! as with you all I have what i call Special arms...but i have it in both arms and i know were it came from My mom has it as well, as her sister and there father and hi s brother and one of his 3 children, my brothers daughter has it as well..i am going to be in a study soon in nyc, I'll post info as soon as i get more info..there is some kind of link to problems with blood so they say and yes i have a blood disorder..as far as heart & kidney problems i know my aunt that had it died from a heart problem in 1978..dont know if it was caused from radiounar synostosis..Yes my both elbows crack it hurts alot..Roseanne ny usa
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replied January 13th, 2010
It certainly wasn't a drug that caused my synostosis but my mum had an X-ray in early pregnancy which they reckon caused the problem.In those days they didn't take much care with X-rays,you could even get your feet X-rayed in a shoe shop to see if the shoes fitted properly. These machine were quite prevalent in the 40's and 50's until there was a world wide ban on their use!!
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replied February 26th, 2010
RadioUlnar Synostosis Number of cases or support group
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? Thanks!
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replied July 11th, 2019
Doctors can be such idiots sometimes, right!?! I was born with bilateral RUS, in neutral with no supination or pronation. My family's doctor never advised x-rays (he advised bowling to develop flexibility; could not have been more wrong!), and my parents did not believe anything was defective. I began having pain and numbness issues and work-related challenges when I was 30, and that's the first time I had x-rays. Synostosis is about 3" from the elbow toward the hand in both arms. Now that I am 60, I have learned a lot about how to compensate, but in so doing, I have exhausted every orthopedist and physical/occupational therapist in the area--only ever meeting one who had even seen it before. RUS affects everything from what I can eat to what I can wear, how I can fix my hair, and the ergonomic keyboard/mouse combination I use. The compensation means, according to one orthopedist, that my arms are like those of someone 25 years older. Arthritis, epicondylitis, bursitis, tendonitis, and sometimes carpal tunnel syndrome are part of my every day. My shoulders are worn out, and my spine and hips are now taking the pressure of movement and positions I have to use to compensate for my arms. I use a walker with arm platforms, because standing still without support is agony. I have a regular cocktail of pain and relaxant meds to take, and rest is a real priority for me when I'm not at work. If you would like to be in touch and learn some of the tricks I've made my own, please let me know.
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replied March 8th, 2010
Hi

I've got a radioulnar synostosis, and have been thinking i was the only one until now.
I am 29 and French.
My "disorder" is located on my right arm and I can't do any supination moves but stock only to pronation.

I have coped with it since I was born, even though some tougher life stages weren't so easy (school, sport and even music etc...)

Still, I've been advised a surgeon could take care of that condition by repositioning me half-way between pronation and supination (without me losing any of the motricity on the pronation "skills" I've gained so far)

I need to double/triple check that statement before I go any further. The doctor that advised me the surgeon looked very relaxed about it, so it's a bit confusing, ie "is he taking it too lightly?" or "is he really confident it works?"

Has someone ever experienced a surgery or faced that situation yet?
Many thanks for your your reply!

Mathieu
Je suis atteint d'une synostose radiocubitale incurvée, au niveau du bras droit uniquement, mais c'est deja pas mal.
J'ai 29 ans, et vis sur Toulouse, on me conseille le Dr Pierre Mansat, qui semble etre un eminent specialiste.
Ma main est bloquée en pronation, mais l'on m'a informé qu'une intervention chirurgicale etait envisageable pour positionner le bras a mi-chemin entre pronation et supination (tout en preservant ma mobilité acquise en pronation ces 29 dernieres années)
Quelqu'un a t il eu recours a une intervention?
le chirurgien orthopedique qui me dirige vers le Dr Mansat semble relativement decontracté sur le sujet. je souhaiterais quand meme avoir un retour empirique sur ce theme.
Si quelqu'un a des pistes je serais ravi de discuter

A bientot
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replied July 11th, 2019
I'm eager to hear if you had that surgery. Both of my arms are fused in the neutral position since birth, and I am glad of that because it means I can use them together to accomplish many tasks most folks can do with one hand.
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replied April 6th, 2010
RadioUlnar Synostosis health concerns?
My son, who is 14 has congenital radioulnar synostosis which affects only his right arm. He is an athlete and has learned to play sports at a very high level,despite this congenital anomaly. I am concerned about the heart and kidney issues. None of his doctors ever mentioned that there could be any sort of problem other than overcoming the difference in his right arm. To rosieangel227- where in NYC is the study being done? Do you have the names of the any of the physicians? We are in New Jersey and I would be curious to speak to any doctor who could tell me what tests need to be done to ensure that my son has no hidden health issues.

Thanks
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replied October 11th, 2011
Response to question on research
Hi momofone33, I can answer your question posed to rosieangel227. I worked with Dr. Bussel at New York Presbyterian-Weill Cornell Medical Center in Manhattan and he is spearheading the research efforts on radioulnar synostosis and hematologic consequences. Roseann and her family were integral in the ongoing study. I hope this helps.

Regards
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replied April 16th, 2010
Bilaterial radio-ulnar synostosis - 45 year old male
Wow - I am sorry that everyone on this message board has or knows someone that has this disability. However, I am excited I found others with radio-ulnar synostosis. I am 45 and up until the last few years lived a very active life pain free. The arthritis is beginning to kick in and has caused much pain in my life recently. Over the years I have endured many many ugly remarks through school, sports and my professional life that for some reason compelled me to make up lies for my handicap. This is a very debilitating disorder in which it has limited many of us in our careers. I just really never understood this disability and just wanted to be like everyone else. I understand that there are some in worse condition than I am in. My arms are in the palm down position with the ability to make minor adjustments with my shoulders. I cannot receive change back without a serious struggle as well many stares from the store clerks. I cannot hold my pen normally and have been forced to place it between the index finger and middle finger to write. I have not been able to just really wrap and hug my children without using the back of my hands. I could continue as well many of you could. However, where do we go from here? I am blessed that my kids do not have this same disorder.
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replied April 17th, 2010
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I just wanted to think you all for posting here, im 24 and all of my live i have had the same problem as the initial post ( same arm, same cracking, not being able to extend) ive had three surgeries and noone of my drs have seen anything like this ive had all types of braces, therapy and nothing helped i was starting to think that i was a rare deformity and getting very down about it, but i feel alot better knowin im not the only one.

just wanted to say thank you.
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replied April 17th, 2010
reply
I just wanted to think you all for posting here, im 24 and all of my live i have had the same problem as the initial post ( same arm, same cracking, not being able to extend) ive had three surgeries and noone of my drs have seen anything like this ive had all types of braces, therapy and nothing helped i was starting to think that i was a rare deformity and getting very down about it, but i feel alot better knowin im not the only one.

just wanted to say thank you.
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replied April 29th, 2010
so glad to have read everyone''s stories...here''s mine...
I am 31 and have sufferred with this my whole life as well, both arms are effected and i have found that over the years that my ability to have any rotation has dimished greatly. I have almost completely lost the ability to rotate my right arm where i used to be able to get it about 3/4 over without much effort. my left arm which used to be hardly noticable is now only able to rotate about half way around. has anyone else had the degeneration issue or is it caused by other things. Also, any issues with anyone using a computer keyboard? I find i have to type from the side of the keyboard.
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replied May 6th, 2010
radioulnar synostosis
I am 55 and have the condition in both arms. When I was five years old specialists told my family that I should never plan contact sports. The doctors felt that the bones wouldn''t heal properly if they were broken.Life has been a daily chore with this condition. I am glad that the disability isn''t so "special" anymore; but I would never wish this handicap on anyone! I have a cousin''s child that also has the condition.Hers was operated on...the arms grew back to the original state. Man can''t change our unique DNA. I have a question...does anyone get social security disability for their handicap ? I never have. Would love to hear more. Chuck. USA
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replied May 12th, 2010
Improvise, adapt, overcome
I am 57 and have 100% turning inpairment of my right hand, 50% impairment on the left. My right arm does not fully extend, there''s always a slight bend of my arm from my elbow.

I have learned to deal with this. I am right-handed, but I have become somewhat ambidextrous over the years. I eat left-handed because I can''t hold a fork in the proper under-handed position. When I play softball, I catch and through right-handed, but bat leftie. I can golf right-handed, no problem there because the right hand is face-down when holding the club.

Life is always a series of compromises and accomodations. I have felt bad about my condition from time to time, but I have learned to "improvise, adapt and overcome."

Nobody''s perfect. Wink
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replied May 25th, 2010
Radioulnar Synostosis
Nice to find I'm not alone. I'm 50 and had the inability to turn both my arms/hands face up, lots of dropped change and difficulty moving anything I can't balance on the back of my hands. I've never really considered it a disability as such, having managed so far. Should I really declare a disability on official forms, job applications etc.I feel I may be discriminated against if I did. Glen, Bradford UK.
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replied October 29th, 2015
Hi Badgeholder,

I relate to your post a lot! I finally put a name to what I have! I'm 51 and can't move furniture etc. without changing the way I hold things. I can't take change from drive-thru's, can't catch a ball, etc. Thanks for your post.
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