Comments on: Congenital Radioulnar Synostosis

By: Linda Miller

Linda Miller — Thu, 03 May 2012 20:39:14 +0000

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.

By: Laura

Laura — Sun, 22 Apr 2012 20:08:54 +0000

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??

By: Sally

Sally — Fri, 24 Feb 2012 11:57:56 +0000

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.

By: Luis

Luis — Tue, 14 Feb 2012 03:54:35 +0000

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.

By: LaTonya

LaTonya — Sun, 05 Feb 2012 05:31:01 +0000

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.

By: Mandy

Mandy — Thu, 19 Jan 2012 21:41:06 +0000

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!

By: Polly

Polly — Thu, 19 Jan 2012 02:53:47 +0000

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.

By: Satish

Satish — Wed, 21 Dec 2011 10:02:47 +0000

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

By: Joshua

Joshua — Fri, 14 Oct 2011 13:50:29 +0000

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!

By: Joshua

Joshua — Fri, 14 Oct 2011 13:42:50 +0000

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!