Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 Belinda, Patty had/has this. She has the webbing of the neck, the sloping shoulders, the scapula which didn't descend and was deformed. She also had surgery on it around age 16. With her scoliosis and the hypotonia she was loosing range of motion greatly and her shoulder was turning in which was hampering her lung compacity. This was one of her biggest. Although it had been done before there were two surgeons who had to make things up together during Patty's procedure because she was " different. " It was about 8 hours long. She has a 10 inch scar on her back and one on her collar bone. But it was a success and it increased her range of motion and lung compacity. Her neck isn't so thick but her shoulder still slopes down. Patty has to exercise to keep her muscles holding things together. If we had known about this when she was young we would have focused more intensely on PT which might have saved her from this surgery. Being hypotonic (loose muscles) hampered this more. There was also clefting somewhere but I just can't remember. I think it occurs often in CHARGE. You might not have that but do you see an orthopedic doctor? Ask him or her about it. Do you remember Chantelle asking about having spaghetti straps continually falling down from her shoulder? That is what happens to Patty because of her Sprengels. Bonnie, Mom to a 22, Patty CHARGE 20, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 think dad has this well he does have the frozen shoulder ive seen you mebntion in here and i believe it isnt necesirly charge course of that reason hugs ellen > > Has anyone ever heard of this? i have something wrong with my shoulders i > have a short scapula and i THINK this might be what i have, i was speaking > to dr geoarge williams about it at the charge workshop, i am going to get my > medical records to find out, because i cant seem to find anyone else that > has this with charge. I did find a link though on google about a girl with > charge syndrome that has it, this was in 1996 and she was about 5 years old. > . has anyone else heard of this, > Belinda > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 nah, its not just charge, but i read once that like 1 - 2 % of charge people have it Re: Sprengel's deformity > think dad has this well he does have the frozen shoulder ive seen you > mebntion in here and i believe it isnt necesirly charge course of that > reason hugs ellen > > >> >> Has anyone ever heard of this? i have something wrong with my shoulders i >> have a short scapula and i THINK this might be what i have, i was >> speaking >> to dr geoarge williams about it at the charge workshop, i am going to get >> my >> medical records to find out, because i cant seem to find anyone else that >> has this with charge. I did find a link though on google about a girl >> with >> charge syndrome that has it, this was in 1996 and she was about 5 years >> old. >> . has anyone else heard of this, >> Belinda >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 Belinda- I think this is what Patty had surgery on her shoulder for. If so, I'm sure Bonnie will chime in. Michele W > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 Hi Belinda, My daughter was described as having winged scapula. This was very early on and we were so bombarded with medical problems I didn't do much research on this problem. Right now she has a bit of a hunched look and pretty limited shoulder movement. She can't put her arms straight above her head and she has trouble elevating them from the sides also. She is a little weak with her upper body. Don't know if this will help at all. mom to Makenna (4) -- Sprengel's deformity Has anyone ever heard of this? i have something wrong with my shoulders i have a short scapula and i THINK this might be what i have, i was speaking to dr geoarge williams about it at the charge workshop, i am going to get my medical records to find out, because i cant seem to find anyone else that has this with charge. I did find a link though on google about a girl with charge syndrome that has it, this was in 1996 and she was about 5 years old. .. has anyone else heard of this, Belinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 Dylan also has these features. Again his cranial sacral therapy is key to improving his range of motion in his arms. Physical therapy did not help, because it was structurally so tight. It has taken much time to get the release we want. I can see Dylan's shoulder blade really popping out when in need of another treatment. Kim > Hi Belinda, > > My daughter was described as having winged scapula. This was very early on > and we were so bombarded with medical problems I didn't do much research on > this problem. Right now she has a bit of a hunched look and pretty limited > shoulder movement. She can't put her arms straight above her head and she > has trouble elevating them from the sides also. She is a little weak with > her upper body. Don't know if this will help at all. > > mom to Makenna (4) > > -- Sprengel's deformity > > Has anyone ever heard of this? i have something wrong with my shoulders i > have a short scapula and i THINK this might be what i have, i was speaking > to dr geoarge williams about it at the charge workshop, i am going to get my > medical records to find out, because i cant seem to find anyone else that > has this with charge. I did find a link though on google about a girl with > charge syndrome that has it, this was in 1996 and she was about 5 years old. > . has anyone else heard of this, > Belinda > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 thanks Bonnie i remember u telling me about that, Can patty put her arms right up above her head? Re: Sprengel's deformity > Belinda, > > Patty had/has this. She has the webbing of the neck, the sloping > shoulders, > the scapula which didn't descend and was deformed. She also had surgery > on it > around age 16. With her scoliosis and the hypotonia she was loosing range > of > motion greatly and her shoulder was turning in which was hampering her > lung > compacity. This was one of her biggest. Although it had been done before > there > were two surgeons who had to make things up together during Patty's > procedure > because she was " different. " It was about 8 hours long. She has a 10 > inch > scar on her back and one on her collar bone. But it was a success and it > increased her range of motion and lung compacity. Her neck isn't so thick > but her > shoulder still slopes down. Patty has to exercise to keep her muscles > holding > things together. > > If we had known about this when she was young we would have focused more > intensely on PT which might have saved her from this surgery. > > Being hypotonic (loose muscles) hampered this more. > > There was also clefting somewhere but I just can't remember. > > I think it occurs often in CHARGE. You might not have that but do you see > an > orthopedic doctor? Ask him or her about it. > > Do you remember Chantelle asking about having spaghetti straps continually > falling down from her shoulder? That is what happens to Patty because of > her > Sprengels. > > > Bonnie, Mom to a 22, Patty CHARGE 20, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Belinda, Patty can put her arms up above her head now. She has to rotate her right shoulder weirdly but she does it to about 75 degrees! Bonnie, Mom to a 22, Patty CHARGE 20, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Bonnie, can she do it straight up though? i can put my arms up til about 75 degrees but i cant put them STREAIGHT up Re: Sprengel's deformity > Belinda, > > Patty can put her arms up above her head now. She has to rotate her right > shoulder weirdly but she does it to about 75 degrees! > > > > > Bonnie, Mom to a 22, Patty CHARGE 20, and wife to > > > Quote Link to comment Share on other sites More sharing options...
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