My 17-year old son was born with Radial-Ulnar Synostosis. It is present in his left arm and he has extremely minimal rotation of his hand and wrist. This has limited him in performing daily tasks without help and also with lifting heavy objects. He has been teased about it all his life. There was no pain present at a young age, but when he started maturing pain started increasing. I took him to see an orthopaedic surgeon when he was 15 years of age. The doctor told him lies and that my son would have to just deal with it for the rest of his life. After the incident of consulting this doctor, he was sent to physical therapy to gain strength in his left arm. He participated in this for several months until there was similar strength compared to the right arm.He would love to have the surgery done. For Christmas this year he has asked for treatment for his arm. I wish there was a doctor that would help make this happen. If anyone could help that would be a great thing.
#1 by Susan M on February 9, 2010 - 9:41 pm
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I don’t know what to suggest other than that you should call every doctor and ask them to look at his x-rays or whatever you afford, until you find a good doctor, with references, who can help you.
I don’t know if this may help now that he is the age he is, but in India there are physical therapist type doctors who have use traction type therapies for amazing results. I don’t know quite how you find one here, but you could try contacting Ayurvedic practitioners.http://www.emedicine.com/orthoped/topic2…
The above article mentions many doctors who specialize in this problem. Why don’t you try looking them up? Some of these doctors can be helpful in assuring you son one way or the other about his condition and its potential for treatment.
What about the Shriner’s Hospitals? I think they do orthopedic work.
#2 by J on February 10, 2010 - 12:11 am
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I have a basic knowledge of synostosis, but you probably have more. We haven’t learned about that yet, but the doctor sounds like he is try to avoid unnecessary surgery, since current techniques are ineffective.
I agree with physical therapy, I am sorry I cannot help you.
#3 by Nick C on February 10, 2010 - 1:06 am
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a quick review through literature tells me surgery is not very successful, and physical therapy may be the best bet. (even if you do opt for surgery, physical therapy is still a must!) just like if a body builder stops doing exercises he’ll lose his muscle tone and definition, somebody with a problem like this should take special care to regularly exercise the problem areas. here’s some info:http://www.emedicine.com/orthoped/topic2…
i’d say, if you want to take the extra effort in searching for somebody who’ll do something more, look for a orthopedic research hospital
#4 by Christina on February 10, 2010 - 1:26 pm
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Hi, I work for Shriners Hospitals for Children. I was scanning my Google Alerts and saw your posting looking for help (since someone suggested Shriners). We accept patients up to the age of 18 and yes, one of our specialties is pediatric orthopaedics. I would recommend you call our patient referral hotline (800) 237-5055 or check out our website: http://www.shrinershq.org/Admission. They can put you in touch with the hospital closest to you that may be able to help. The best part is there is no charge for any of our services…and if you are not near a hospital, many times Shriners in your area may be able to help you with transportation. Good luck!