Connections » General Discussion

Possible Surgical Treatment for Radial-Ulnar Synostosis?

(24 posts)

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  1. rosieangel227
    Member

    Hello all I also have radial synostosis. I'm 42 my mom has it, her sister and her father his brother and his daughter my brothers daughter. we are looking back to see who else in the family has it i think as far as i can tell it has been in our family for many years.. my family is from Italy so i have to do some searching but i do have open lines with them it should not be hard...I too was told as a new born in 1967 to leave it alone. my mom asked when i was born..i have lived like you all having problems holding forks..getting change..playing some sports but i did dance until i was 16 it got much worse as i got older..lifting is a real pain..but i too have just done my best..i am very happy to see others with it, i thought it was only my family that had it..my brothers daughter has had surgery on her arm for other problems and the drs have told her to leave it alone and she has been to the best dr's in NYC..but i just spoke to a Dr that is doing a study in nyc for problems with blood & RS so as soon as i get more info i will post it.
    I also have had really bad back pains too for about 20+ years i was never told it was related, but now after reading post i know it is..
    as far as heart problems & kidney I'm going to check it out asap..my aunt died in 1978 of some kind of heart problems.. i would love to talk to anyone with more info and will tell dr's in the study to check out this post//

    Roseanne

    Posted 8 months ago #

  2. MamaMia
    Member

    Wow! How amazing to read all the different stories. My son is 11 and was diagnosed just before age 2. He is a very active boy, he has played basketball, baseball and soccer. He has always adapted to the situation very well. My husband and I are wondering if the future back pain, etc. should be avoided by considering surgery. We too are Italian and have no family history that we are aware of. My husbands Mother was adopted near Rome in the 40's so when we read Roseanne's post we were thinking maybe this is the missing link (LOL)! Is there anyone over the age of 20 that wishes their parents would have considered chosed the surgery at a younger age? We really appreciate your input. Thanks, Jeanette & Mario

    Posted 8 months ago #

  3. rosieangel227
    Member

    Hello Everyone,
    Just wanted to add my nice that is 12 and we have known that she was born with rus in one arm has been to many Dr's in NYC and they all agree to leave her arm alone..I would have got the surgery done for sure but when I was young it really was easy to live with it was just my crazy arms..lol
    I want to add this info also my grandpa was a master brick layer my aunt was a dress maker my mom is so creative my cousin in Canada is also into art and i love art as well my 12 nice is also so creative what I'm trying to say it has never held any of us back in using our hands in some very creative ways..
    The Dr. is coming to my home to take blood for the study i posted i will get more contact info and post asap..
    Jeanette my family is from Rome..lol I'm gonna ask my aunt..you never know..
    Roseanne

    Posted 8 months ago #

  4. MamaMia
    Member

    Very interesting! Thanks for the post. My Mother-in-law is very creative, she is an artist and very talented in sewing as well! You never know, we may need to have our blood drawn for study also! Keep us updated, your story is amazing!
    Thanks,
    Jeanette

    Posted 8 months ago #

  5. rosieangel227
    Member

    Well i want to ask any of you with RUS if you have any blood problems? like bleeding easy, or low platelets? They are trying to find a link between the too..
    let me know
    Roseanne

    Posted 7 months ago #

  6. lkumar01
    Member

    Dear Dr. Harley,

    I am a 60 year old male, aerospace professional. Due to a childhood (12 years of age) accident, my right hand radius and ulna bones are fused together proximal to the elbow joint. There is almost no supination/pronation motion, but up until recently I did fine with the shoulder joint compensating for it. I mean went through college, played excellent tennis, etc. But now, I am in increasing discomfort and pain. One of the orthopedic surgeons from USC is suggesting radial head replacement procedure. Could you please comment on the likelihood of a positive outcome? Thanks.

    Posted 7 months ago #

  7. Travis
    Member

    Hello Liz
    Seems I found another group.
    I live in Ohio and my son and I have been all over this part of the States looking for help. He is 7 and has it Bilateral. Im hopefully jetting off to California to speak with other orthapedic surgeons. If it was me afflicted I would go have a surgery done tomorrow if for nothing else that to have the world gain knoeledge as to what does or doesnt work. It being my son I'm not gambeling until all the info has been processed. I have been in contact with alot of surgeons as well as all of you have. Im looking as I said in California as well as Asia now. Making the surgical community aware of this is the only way studies and future treatments will come to be. I have spoke with many doctors that have never heard of it before. Im currently sending out xrays and cd's to doctors hoping that they may share the info with other colleagues and talk amongs themselves hopefully to find an answer. God bless you all and we'll keep tryin on this end.

    Posted 7 months ago #

  8. Martha
    Member

    Hi, what an incredible site, things are making so much sense. My husband (47) has rus in both arms and is unable to rotate at all. My son (second born out of 3 children) who is 11 has a "bendy" left arm, we found it when he was 15 months and he was unable to turn his hand over to wash it under the tap. He is lucky that it isn't in both so he is able to cope with his own personal hygiene etc but he does find it annoying at times. He is very determined and although he has found there are a number of things he is unable to do ie play the violin, guitar etc although he has managed to find his own way around alot of things for example he holds a cricket bat in a very odd position but it works for him. We have decided that surgery would be a bad idea as it is likely to make matters worse. We have a fab physio who has said she will see him every 6 months 'til he is 16 and gives him exercises to encourage the muscles to work as they are in funny places too. It was very interesting to read about sore shoulders and backache as my husband has recently experienced both of these and hadnt thought it might be due to his arms. I am very comforted that there are others out there - hadnt really thought to look it up on the computer - we were just told they were rare!

    Posted 6 months ago #

  9. Kim37
    Member

    Hi Everyone,
    I am doing research on-line to figure out how best to assist my 6 years old son. He has bilateral radial ulnar synostosis. When he was younger, he received some OT help through early intervention. He was able to compensate and performed age appropriate tasks so he no longer qualify for OT service through the school.However, now that is in 1st grade, he found some tasks more challenging. For example, it takes him longer to write and do school related tasks than children of his age group. Since he does not understand that he has a condition that prevents him from doing certain activities, he is begining to perhaps developing self-esteem issues. He compares himself with others and feel really sad about his performance. He has many bad days in school. Is anyone facing the same challenge as is relates to school and what are you doing to address the issues???

    Posted 6 months ago #

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