Friday, June 1, 2012

Radioulnar Synostosis

Radioulnar synostosis literally means a bony union between the two forearm bones.  Normally, the ulna bone acts as a straight "post" to anchor the wrist to the elbow.  The radius bone rotates around the ulna to allow the forearm to turn palm up and palm down.  This rotation is helpful for daily activities and allows many actitivies such as typing on the keyboard (palm down or "pronation") or hold change (palm up or "supination").  Almost all rotation comes through the forearm (ie the relationship between radius and ulna) but some can come through the wrist bones also.

Some kids are born with a bony connection between the radius and ulna.  This bony "bridge" can also develop after a trauma in an adult.  When that happens, the bones are no longer separate and the ability to rotate the forearm is not present.  Because the shoulder is so mobile, we can make up for some loss of forearm rotation with shoulder movement.  It is pretty easy to pull arm away from body- abduct- and the hand assumes a palm down position.  It is less easy to move the shoulder in such a way to allow the palm up position.

The bottom line is that kids adapt amazingly well to radioulnar synostosis.  Often, families do not even realize this condition is present until after kids start school.  There is no pain and, as noted above, some rotation can be achieved through the wrist.  When both sides are affected, it may be a little more challenging to adapt.  Additionally, it matters in which position the forearm is fused.  The forearm can be "stuck" in full palm up (supination), full palm down (pronation), or anywhere in between.  The best position is half- way between (the clapping position) which allows the patient to use the shoulder to help accommodate in both directions.  Palm down is better than palm up as so many of life's activities are palm down (keyboarding, etc).

In a small number of kids, the forearm position causes trouble with activities.  In those, a small surgery can be done to reposition the forearm in a better position for function.  The pictures below show a patient positioned with both forearm in mid rotation.  He has no issues with function despite his limited rotation.

Synostosis with full elbow extension
Synostosis with full elbow flexion


Synostosis with attempted supination- palm up

Synostosis with attempted pronation- palm down

Xray showing synostosis near elbow.  The two bones are joined together.

48 comments:

  1. Hi,

    My daughter is also suffering like above. Can surgery help her to improve condition. Please advice.

    thanks

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  2. Thanks for the question on radioulnar synostosis. Sometimes surgery can help improve function but it depends on how much function is impaired by the condition. In other words, sometimes kids do just fine and can accomplish all tasks- in this situation I would not recommend surgery. However, in other cases- especially when the forearm is stuck in a more palm up or down position- surgery can reposition the arm into a more functional position. Good luck!

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  3. I was born with radioulnar synostosis. My mother took me to a doctor when I was 12 at my request to know what was wrong with my arms. I will always be grateful to her because knowledge is power.
    I have an aunt and an uncle who also have radioulnar synostosis, both siblings of my father.
    I am now 50 yrs old. I never had corrective surgery, and I believe I have had, and still have, a full life.
    My curiosity on this condition has only flared up because I am experiencing a variety of, and degrees of, pains.
    Can you recommend a doctor in my area with sufficent experience?

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    1. Thank you for your comments. It is unusual to develop pain at 50 when you have not had pain before. It could be coming from the elbow joint as sometimes patients also have a dislocation of the radial head. A great resource for finding a physician is ASSH.org. The website will be able to direct you to a specialized hand surgeon in your area. Feel free to email me offline if I can help further. congenitalhand@wudosis.wustl.edu

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  4. I am an 18 year old male with this condition in my left arm only. And I just want to tell others who are affected by this condition that I have played baseball my entire life and occasionally started varsity games at shortstop (known for getting a lot of ground balls hit to them).I learned to backhand every ground ball. I did not let this "deformity" define or control me and neither should you. Just remember, with every burden there is a blessing.

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    1. Jonathan, thank you so much for your comment- incredibly important. Congratulations on your baseball success as well.

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  5. I was also born with this condition on both of my arms; my left palm turns to a 45-50 degree angle while my right palm (dominant hand) can turn to 90 degree angle. My parents took me to Children's Hospital in Boston when I was 6/7 years old to find out if anything could be done to correct them. The doctors operated on my right elbow and I was in a cast for months with two skinny, silver "sticks" (not sure what they're called) inserted in my elbow. After my elbow healed, they took off my cast and removed the "sticks", and I still remember the intense pain I felt when they slowly and carefully took them out of my elbow, I tried so hard not to cry :(

    The operation allowed my right palm able to supinate a little more than my left, which is why it is able to turn at a 90 degree angle. I didn't really think too much of the situation since I was so young, but looking back I am glad I went through it and had my parents by my side. I am now 21 years old and have learned to accept this as part of who I am and learned to laugh at my failed attempts of getting change from a cashier. My arms make simple tasks a bit difficult and annoying at times but I am able to do most things in life just fine. I can drive, work, write, type, hold objects, do my makeup, and so much more with little difficulty. This condition doesn't hold me back. I was even a cashier for a couple years, but I absolutely HATED getting change from people, I always felt so awkward lol

    I always thought I was the only person in the world with radioulnar synostosis, I'm relieved to find out I'm not alone :)

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    1. Thank you for the comment and for sharing your experience. It is true in my experience also that things like holding coins (or M&Ms) can be tricky if supination is limited.

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  6. Hi, I also was born with radio ulna Synotosis in my left arm. My left arm was born in the supination position, meaning my hand should be stuck in the palm up position. However, my hand was born facing the other way, the pronation position (palm down). Luckily my aunt tried to put a braclet on me when I was almost one and noticed that my arm was off and I cried when they tried to turn my hand Palm up. At the time, we saw a specialist, but they had only heard of one other person having the same condition. My question to you is have you heard of this before? At 24 now, I'm trying to learn more so I can change my exercising habits. I've noticed that a lot of exercises put more strain on my shoulder and upper back, and sometimes lead to pain (which I learn to try to modify the exercise or not do it at all). Any suggested reading or sources that could point me to so I can tailor my exercises to work with this version of Synotosis. Thanks!

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    1. Alex, thanks for writing and sharing your experience. What we find most challenging for kids is the palm up (supinated) or palm down (pronated) positions. Kids born with radioulnar synostosis in a neutral posture typically do very well with minor challenges only. But, when the forearm is "Stuck" in a more palm up or down position, tasks are harder. And, as a result, attempted movements put more stress on nearby joints. I believe that is what your are experiencing. Unfortunately, I do not know of any resources to provide more information but the simple answer is to avoid exercises which cause stress or pain. And, as a basic response, the idea of surgery is to put the forearm in that neutral posture to avoid some of the stress that you are experiencing. Good luck.

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    2. This comment has been removed by a blog administrator.

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  7. I'ma mother of three children, all with congenital proximal radio ulnar synostosis.
    My oldest, now 20 years of age, has partial rotation of his left wrist, and full rotation of his right. We were unaware of his RUS until he started playing guitar at 15 years of age.
    My 5 year old twins have bilateral RUS, with both of them having their arms pronated. They underwent derotational osteotomies at Mater Children's Hospital, in Brisbane Australia, at roughly 2 to 3 years of age to fix their arms into a position between pronation and supernation. This has improved functionality, but they still are having issues with some activities, such as bouncing and catching balls.
    Is it normal for them to have ongoing difficulties after having surgery?

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    1. Toni-Anne,

      Thank you for the question. It is really rare to have multiple kids with congenital proximal radioulnar synostosis. Do your kids have a syndrome? Your oldest seems to have a typical story where the lack of rotation may not be noted until a specific activity is a challenge. And your twins are also typical if the forearms are positioned in either a supination or pronation position.

      We would have treated your twins similarly. And generally, kids do very well. But it is not uncommon to notice some limitations as you state. Unfortunately, there is little that can be done.

      Thank you again for writing,

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    2. Fortunately, there are no other medical conditions that we are aware of.
      One twin has a non-terminating sacral dimple, but that's more an indicator of spina bifida occulta.
      Interestingly, my monozygotic twin sister doesn't have any children with RUS.

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    3. Interesting. Thank you for additional information.

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  8. I have the condition in my left arm and its in a fixed position with 0 rotation. I would like surgery that would give me the ability to have some rotation. Most of the post I have read are for children, when I was a child there were no options but with new technological advances in techniques there is a possibility to change the position for some or possibly full rotation. I would like references of doctors who perform the surgery in the United States, I reside in the state of Georgia. Please list them if anyone has information of doctors who perform the surgery in or out of Georgia it would be greatly appreciated.

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    1. Anews,
      To date, we have not been successful in restoring forearm rotation despite numerous different surgeries that have been attempted. Unfortunately, technology has not yet proven helpful given the extreme complexities of forearm rotation.

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  9. One of my twins was diagnosed with radio ulnar synostosis at onky a few months old. She is now nearly 3 and is starting to struggle with things like hand washing, holding a pencil and cleaning herself after using the toilet. Her hands are 'stuck' in a palm down position and she has zero rotation in either arm, her surgeon has recommended surgery in the next few years, however I am torn as to whether surgery is the best option or not!

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    1. Thank you for the question. The complete palm down position can be tough for function, especially when both sides are in that position. While your daughter will figure things out and be able to accomplish most activities, there will be struggles with certain tasks in the future. A neutral position (1/2 way between palm up and palm down) is much better tolerated and typically allows better function. So, the bottom line is that in my experience, surgery can be very helpful. Good luck!

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  10. MY DAUGHTER WAS DIAGNOSED WITH THIS LAST YEAR IN HER RIGHT ARM AND SHE INSIST ON BEING RIGHT HANDED AND SHE HAS DIFFICULTY WRITING IS THERE ANYTHING YOU KNOW OF TO HELP. ANY TRICKS? ALSO, I WAS TOLD MY CHILDREN'S HOSP LITTLE ROCK AR THAT SURGERY HAS NOT BEEN SUCCESSFUL THEY HAVE EVEN TRIED PUTTING FATTY TISSUE BETWEEN THE BONES WHEN SEPARATED AND CORRECTED AND THEY ALWAYS FUSE BACK TOGETHER. THE ONLY THING THEY SAID THEY CAN DO LATER ON IS SHAVE THE BONE DOWN THAT STICKS OUT IF IT GETS SENSITIVE WHEN BUMPING OR TOUCHING LATER ON.

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    1. Thank you for sharing Tiffany. Ultimately, your daughter will figure this out with (or without) our help. I do not have specific tips although there are different style pens which some find helpful. I agree with your doctors.

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  11. I have radialulnar stenosis dominate right arm. Fused in neutral position, cannot supinate my hand at all. Didn't pay attention to it until in grammar school could not do chin ups. I compensated and did pull ups because of shoulder compensation for pronation. As a result I became somewhat ambidextrious and use my left hand for many thing that would have normally made me use might right. I was athletic as a child and still as a 65 year old man. Played college tennis and still play today. Lucky for me it was just one arm and in the neutral position between pronation and suppination. I guess I was fortunate. I am starting to get some tennis elbow symptoms. Wondering if this condition could be related to my situation, not being able to rotate elbow.

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    1. Steven,
      Thank you for sharing. Very helpful information. In response to your question, the synostosis may lead to accomodation at other joints which theoretically can cause problems over time. So, while there is no clear science on this issue, I share your belief. Good luck.

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  12. I have radioulnar synostosis with my left arm. But its not as bad as a lot I've seen. I can move my palm almost up about 3\4 there. I really really want to join the military. Afraid I'll get denied. I feel like its a chapter I need to do in my life. Any thoughts?

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    1. Dustin,
      I cannot answer the question on whether you will be accepted into the military as there are many factors that are considered. For most of my patients with synostosis, heavy activities (including military duty) are reasonable and well tolerated.
      Good luck.

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  13. Hi,

    I was born with Radioulnar Synostosis on both my arms, I am 21 years old now. My right arm can turn into the 90 degrees position while my left arm which is in handpalm down position can't turn at all. I'm having lots of trouble with my left arm, because it's never in a relaxed position and it's somewhat twisted, not symmetrical with my right arm. I am wondering if it's possible if my left arm can be positioned to a better position like my right arm.

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    1. Hello Mesailu,
      Thank you for the question. Having an arm completely in the palm down position (fully pronated) is a functional challenge even though many activities including typing and writing may be easy.

      The only option is surgery- an osteotomy of the forearm bones to rotate them into a more generally functional position. It may be something for you to consider. It is a common surgery for patients with radioulnar synostosis. I hope that is helpful.

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  14. Hi. I am 17 and i was born with synostosis in my left arm. My arm is stuck in the palms down position. I have never had pain in my arm until the last few years. It wasn't often that i had this pain until the last couple months. Now the pain is almost everyday. It isn't an unbearable pain, but it is noticeable. To my knowledge i have not dislocated my elbow and i have never broken a bone. I was just concerned ad to whether or not this will go away in time or if i should go to a doctor about it.
    Thank you!!

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    1. Hey Abbey. Thank you for the question and I am sorry you have pain. You are correct, this is unusual but it could be from strain related to the fixed position of the forearm. Given that the pain has been present for several months, it probably does make sense to see a doctor. Good luck.

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  15. Hi.im 15 years and have synostosis in my left arm. I think its the clapping position because it can turn half way. This means i am unable to do the bicep curl. Can this affect muscle growth?

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    1. Hello Callum and thank you for the question. I don't believe this will affect muscle growth. And, unless I misunderstand, you can still perform bicep curls, just not in the palm up position.

      Good luck.

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    2. It will definitely affect muscle growth. The lack of supination means many muscles in the forearm and upper arm remain underdeveloped or non-existent (e.g. supinator muscles). These muscles link with the scapular muscles, so there tends to be weakness in the upper back as well. I would not be surprised if patients with RUS exhibited higher-than-average incidence of postural deficiencies.

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    3. Jonathan, thanks for chiming in. To be clear, the lack of forearm rotation due to the synostosis will, to some degree, affect the development of the forearm muscles that control rotation. However, the key muscles (pronator teres and supinator) cross the elbow joint so they will develop to a reasonable degree as the elbow joint-the ulnohumeral joint- is typically normal. In addition, the brachialis which helps with elbow flexion develops well.

      The bottom line in response to Callum's question on whether flexion of the elbow joint (biceps curl) will be limited is that in most patients the biceps curl is well maintained.

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  16. I am 42 years old and have this in my right arm. I am right handed but eat with my left hand and I'm sorry if this is too much information, but clean myself after the toilet with my left hand. Everything else I do with my right even though I cannot move my wrist too much. My mother had this in both arms. My daughter has no problem, thank God! My parents never thought to have it looked at, and I've asked my doctor a few times and all I be is a puzzled look. I always thought I was the only person like this. Good to know I'm not alone!

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    1. Dap, thank you for your comments and for sharing your experience.

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  17. I was born with rus in both my arms. My right arm is slightly better than my left. Thank God I'm right handed! My right hand faces inward towards my leg but my left hand faces palm down. They operated on my arm when I was 7 so that I would have better use of my hand. I was always in a lot of pain in my left elbow after the surgery that I remember wishing I hadn't had the operation. Now in seeing all these posts I am glad because it did make life easier although still complicated. My left wrist goes out of place while washing dishes, especially heavy pots. But I have learned to be careful when doing things and I find that now in my mid 40's I am in chronic pain in my elbows, neck, and hands...especially my thumbs. Also, I have issues with my hips to the point that I can't walk or it will stop me in my tracks because of very sharp pain just left to my tailbone. I believe it is related to my rus? Also, I experience numbness in both outer two fingers (ring and pinky fine) on both hand and in my feet. As a kid I only had chronic pain on my left elbow (the arm they operated on) but when I did something like hold a book for any period of time or hold grocery bags or things of that nature for more than ten minutes and the pain in my elbows was excruciating. Now I find that whenever I do something repeatedly like while cleaning the bathroom, mopping, laundry etc. I am in a lot of pain. Every job I've done whether manuel or sitting affects me in some way...even typing hurts my hand. So I am curious if you have any recommendations? I take a lot of ibuprofen when I do any type of activity where I use my hands for an extended amount of time. I believe I have carpal tunnel because of rus and I can't even peel potatoes...it just hurts. I am glad to see that there is now a blog and some support groups for this because I thought that I was alone. All I knew is that this was extremely rare. Before today I had never openly talked about this so I'm sorry for ranting and I'm done now��

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    1. Sheila,
      Thank you for sharing your experience. I am sorry you are having pain, most patients with radioulnar synostosis do not. Seems like there may be more going on than only radioulnar synostosis. Good luck.

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  18. Hi Charles, my name is Paul welch and I'm from the uk, I've just been told that my 2 year old son as got RS in his left arm, palm down I think, but he can turn it almost to a full clapping position, do u think surgery would be able to help it get an even better position?

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    1. Hello Paul. It is difficult to know whether surgery will be helpful. While a small number of kids have a radioulnar synostosis that allows motion, most have no motion through the forearm. Sometimes the forearm is completely stiff and motion is really coming from the wrist joint. If this is the case, surgery will not help. I hope that helps. My email can be found at the bottom of each blog post and is: congenitalhand@wudosis.wustl.edu

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  19. Hello Dr. My name is aiman and im from Malaysia. When i was 11, i broke my right hand when performing high jump. Then after few months during recovery, i found out that my right hand cant supinate, only pronation (which is in neutral position). It affected my muscle growth. What should i do to regain it? Is it necessary for surgery? Im now 21 years old and i have suffer it for 10 years. I hope you can give me the best answer. Thank you Dr.

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    1. Aiman,

      Thank you for the question. I am sorry to learn of your lack of forearm rotation. An x-ray will be very helpful in understanding what might have been affected by the broken bone. It is also possible that the rotation was limited even before the fracture but only realized after your injury. Hopefully an orthopedic surgeon can help identify the problem. Treatment, however, may be trickier and there in not likely an easy 'solution'.

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  20. I am 43, and have RUS bilaterally, with my palm facing down in both cases, absolutely zero movement.
    As a child, my parents took me to some specialists (who never gave us a diagnosis name...two students just did a presentation on my overcoming a disability and found the name for it), and everyone agreed that surgery could be attempted, but there was no knowing if the problem could be corrected. Now, this was the 70s, so there wasn't a lot of information and certainly no WWW to search. They suggested waiting until I was 25 to be sure everything was done growing and then they said they could attempt to break the bones apart and reset them.
    By that age, I'd become so accustomed to doing things "my way" that I really wasn't interested in going through the pain of surgery.

    To those of you with pain...I do sometimes feel an aching deep in my bones/where they're connected. My doc has given me meds for arthritis, but I take them very infrequently. It was worst when I was going through puberty and has just recently come back off and on.

    I was kept quiet as a child so that I wouldn't break myself...because they weren't sure how to fix me, but I did play volleyball and participated in track. Now as an adult I do obstacle course races and many other things.

    I've adapted just fine, though, like others, receiving change is the worst!! I do notice that to compensate, I roll my shoulders forward and have horrid posture...so those of you experiencing other symptoms, this could be why as well.

    Anyway. thanks for this site, because until today, I thought I was the only one. (my sister has passed on, but she had one arm this way, and so it makes sense that it's congenital)

    :)

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    1. Denise. Thank you for sharing your experience.

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  21. We are in NW Arkansas and my daughter is 12. She has recently started having a lot of pain because of her RUS. We are headed to the dr. today. she has not been officially diagnosed but the xrays they took at the hospital on Sunday show that her bones are fused. The tech said he'd never seen anything like it. i am interested to see what her ped says. i have printed out some articles on RUS to gie to him. He sent us to PT and OT for it a few years back to no avail. I really don't think he will know about it. Over the last couple days I have learned so much about it and I am thankful for groups like this. My daughter has done competitive cheer for the last 5 years and has not let it bother her. Now that it is painful, she fears she will have to stop cheering and tumbline.

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    1. Good luck. Usually the pain will calm down unless there is a radial head dislocation- sometimes that continues to be an issue.

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  22. Dr Goldfarb, My 7-yr old daughter has congenital RUS in her left arm. We learned of it when she was about 18months old. Recently, for about a year, she has been experiencing notable daily pain in her left arm near the wrist and near the elbow. So much so that she cries if someone touches the arm. We have visited an Orthopedic surgeon in the Berkeley/Oakland area, however, because the condition is rare.... they don't have a lot of experience with the condition. Usually, it seems, people don't have this sort of pain. We undertand that the arm muscle may be attempting to supinate the arm and pulling at the wrist, causing pain and tendentious throughout her arm. We are considering surgical options. We would like to get a second or third opinion on the condition. (We have done a CT Scan and x-rays) Do you have recommendations of hospitals that may have the most experience? Or individuals that we may want to consulate with? Thank you, Carrie

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    1. Carrie,
      Thank you for the question and I am sorry that your daughter is having pain. You are correct, it is unusual to have any complaints. Two close- by options include Oakland Childrens Hospital (with orthopedic surgeons specializing in the upper extremity) and the Shriners Hospital in Sacramento. Good luck.

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  23. Jonathon you just brought so much peace to my mind ... my son is 12 and has been playing sports since 6 , has been a hockey player and baseball player . He strives to be an elite athlete . I just made a doctors appointment. He says he is ok , it's limited on his left arm . I'm a nervous mom right now doing research

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