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Thread: someone has winged scapula?

  1. #1
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    someone has winged scapula?

    A medical said that this is a clear proof of the muscular weakness of my daughter. She also said that my daughter inherited it from my wife. She put her fingers behind the scapulas of my daughter and my wife also, and then showed them how impossible is to do the same with me.
    Abr people said that it is one of the signs of a collapsed pneumatic skeleton. I donīt know how often are present winged scapula in people with scoliosis

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    Flerc, does your daughter and wife have loose joints? Are they very flexible? Can they bend their arms and hands and fingers much more than you can?

    Also, with my horse, the looser and more supple he is the more you can push your fingers in-between certain muscles. It changes with him base don which training he is doing but may not change with humans.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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    Quote Originally Posted by Pooka1 View Post
    Flerc, does your daughter and wife have loose joints? Are they very flexible? Can they bend their arms and hands and fingers much more than you can?
    Yes Sharon, exactly as you said. My daughter even more than my wife. I think she could dislocate her shoulders as Houdini used to do. We always tell her that she could works in a circus.
    It changes with him base don which training he is doing but may not change with humans.
    Sorry, I think I'm not understanding that part. Do you means that with humans, muscular training may not change that condition?

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    Quote Originally Posted by flerc View Post
    Yes Sharon, exactly as you said. My daughter even more than my wife. I think she could dislocate her shoulders as Houdini used to do. We always tell her that she could works in a circus.
    Have you spoken to a doctor about the many connective tissue disorders including Marfans syndrome, Erlers-Danlos, Charcot-Marie-Tooth, etc. that go along with scoliosis? This is very important as some life-threatening complications are possible with some of these disorders.

    Sorry, I think I'm not understanding that part. Do you means that with humans, muscular training may not change that condition?
    Yes if it is a genetic syndrome.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

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    Hi,

    My scapula is similar to what you describe, and I always thought it was due to the scapula not laying smoothly over the ribs due to the rotation that comes with scoliosis.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

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    Quote Originally Posted by Pooka1 View Post
    Have you spoken to a doctor about the many connective tissue disorders including Marfans syndrome, Erlers-Danlos, Charcot-Marie-Tooth, etc. that go along with scoliosis? This is very important as some life-threatening complications are possible with some of these disorders.

    Yes if it is a genetic syndrome.
    The current surgeon said that none of the typical scoliosis diseases are present in my daughter, because she has not enough clear symptoms and the shape of the curve is not according to those diseases, but to an idiopathic one. Other surgeons said also that it is idiopathic, but I donīt know if surgeons could know enough about all that kinds of diseases.
    I visited a rheumatologist with an extended list of diseases. She donīt liked I did it, she said me that she hate that people without any knowledge like me, ask questions about things that could not understand, founded in Internet. I believe she also told me that Erlers-Danlos could not be present because the absence of another symptoms, even she could has joint laxity (is not enough clear that point). She only gave me a recipe including an blood study of CHD7 gen.
    Marfan was discarded because she is very low, but I have read once, in a page that I could not seen any more, about a disease like Marfan but present in low people. Do you know which could it be?
    I think that in general is not a real professional study what they do. They only look for very clear symptoms. It always seemed to me as superficial tests.
    I don't remember about Charcot-Marie-Tooth. We are going to visit a neurologist and I'll ask him about that. Now I'm decided to visit again a rheumatologist and ask again about Erlers-Danlos.
    All those problems appear to be high connected.
    Thanks Sharon, I really feel you helped me saying what you said.

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    Quote Originally Posted by leahdragonfly View Post
    Hi,

    My scapula is similar to what you describe, and I always thought it was due to the scapula not laying smoothly over the ribs due to the rotation that comes with scoliosis.
    I believe is logic what you says. Maybe a multi causal problem?. I visited a Geneticist these week and when I told him about winged scapula, he said me that a neurologist should to see my daughter.
    Abr people says that is a symptom of a collapsed pneumatic skeleton. I think is always present in children with cerebral paralysis.

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    Quote Originally Posted by flerc View Post
    The current surgeon said that none of the typical scoliosis diseases are present in my daughter, because she has not enough clear symptoms and the shape of the curve is not according to those diseases, but to an idiopathic one. Other surgeons said also that it is idiopathic, but I donīt know if surgeons could know enough about all that kinds of diseases.
    My daughters had a typical right thoracic curve and they are being monitored for aorta enlargement which is the final symptom they need for a diagnosis for Marfans if they have it. What EXACTLY about your daughter's curve made the surgeon say the shape means idiopathic and not connective tissue disorder? I have never read on any scoliosis or Marfans website a single comment about connective tissue disorders having a characteristic shape to the scoliosis. I doubt it HIGHLY.

    By the way, I understand our surgeon to say that the connective tissue disorders are all still "AIS" I suppose because they still don't know the mechanism connecting connective tissue abnormality and scoliosis. So that doesn't agree with what your surgeon said either.

    It is not the case that one surgeon is right and another wrong. I think there is a range of opinion because nobody knows anything.

    I visited a rheumatologist with an extended list of diseases. She donīt liked I did it, she said me that she hate that people without any knowledge like me, ask questions about things that could not understand, founded in Internet. I believe she also told me that Erlers-Danlos could not be present because the absence of another symptoms, even she could has joint laxity (is not enough clear that point). She only gave me a recipe including an blood study of CHD7 gen.
    Okay. One of my (identical twin) daughters has a diagnosis of "hypermobiolity syndrome" but I think that is just to give her a diagnosis until Marfans is diagnosed if it is ever diagnosed. And what one twin has the other has. We don't know if they have it or just have the skeletal symptoms of it. They have no other symptoms besides skeletal so they don't meet the diagnosis for Marfans now.

    Marfan was discarded because she is very low, but I have read once, in a page that I could not seen any more, about a disease like Marfan but present in low people. Do you know which could it be?
    To my knowledge, you CANNOT discard Marfans ONLY on the basis of not being tall. There are Marfans patients who are short. You need to find a pediatric geneticist who is experienced with diagnosing genetic connective tissue disorders. We have one and she took about 3 HOURS to go though all the tests and discussion of family history and such. It is the longest doctor visit I have ever been through BY FAR. The woman clearly blocks out her schedule when doing this type of work. Find someone who will take a detailed family history and do an appropriate work up before they discard a diagnosis.

    And remember with Marfans, ~25% of the cases are NEW mutations with NOBODY else in the family having Marfans. If my daughters have Marfans, it is almost certainly a new mutation.

    I think that in general is not a real professional study what they do. They only look for very clear symptoms. It always seemed to me as superficial tests.
    Yes you are right. There is nothing superficial about determining if a child has Marfans.

    And the other thing about Marfans is that just because you don't meet the diagnostic criteria now, doesn't mean you won't meet it later. My kids have to have their aortas monitored the rest of their life... Marfans can develop at ANY AGE. Just because you make it to your 40s let's say without meeting the diagnosis doesn't mean you can stop imaging your aorta. It's forever if you have enough indicators. The genetic test is not useful since at least 10% of people with Marfans test negate on the test.

    I don't remember about Charcot-Marie-Tooth. We are going to visit a neurologist and I'll ask him about that. Now I'm decided to visit again a rheumatologist and ask again about Erlers-Danlos.
    All those problems appear to be high connected.
    Thanks Sharon, I really feel you helped me saying what you said.
    Denada, Fer. Esta muy importante.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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    Quote Originally Posted by Pooka1 View Post
    My daughters had a typical right thoracic curve and they are being monitored for aorta enlargement which is the final symptom they need for a diagnosis for Marfans if they have it. What EXACTLY about your daughter's curve made the surgeon say the shape means idiopathic and not connective tissue disorder? I have never read on any scoliosis or Marfans website a single comment about connective tissue disorders having a characteristic shape to the scoliosis. I doubt it HIGHLY.

    By the way, I understand our surgeon to say that the connective tissue disorders are all still "AIS" I suppose because they still don't know the mechanism connecting connective tissue abnormality and scoliosis. So that doesn't agree with what your surgeon said either.

    It is not the case that one surgeon is right and another wrong. I think there is a range of opinion because nobody knows anything.



    Okay. One of my (identical twin) daughters has a diagnosis of "hypermobiolity syndrome" but I think that is just to give her a diagnosis until Marfans is diagnosed if it is ever diagnosed. And what one twin has the other has. We don't know if they have it or just have the skeletal symptoms of it. They have no other symptoms besides skeletal so they don't meet the diagnosis for Marfans now.



    To my knowledge, you CANNOT discard Marfans ONLY on the basis of not being tall. There are Marfans patients who are short. You need to find a pediatric geneticist who is experienced with diagnosing genetic connective tissue disorders. We have one and she took about 3 HOURS to go though all the tests and discussion of family history and such. It is the longest doctor visit I have ever been through BY FAR. The woman clearly blocks out her schedule when doing this type of work. Find someone who will take a detailed family history and do an appropriate work up before they discard a diagnosis.

    And remember with Marfans, ~25% of the cases are NEW mutations with NOBODY else in the family having Marfans. If my daughters have Marfans, it is almost certainly a new mutation.



    Yes you are right. There is nothing superficial about determining if a child has Marfans.

    And the other thing about Marfans is that just because you don't meet the diagnostic criteria now, doesn't mean you won't meet it later. My kids have to have their aortas monitored the rest of their life... Marfans can develop at ANY AGE. Just because you make it to your 40s let's say without meeting the diagnosis doesn't mean you can stop imaging your aorta. It's forever if you have enough indicators. The genetic test is not useful since at least 10% of people with Marfans test negate on the test.



    Denada, Fer. Esta muy importante.
    So then, how do they make the diagnosis of Marfan's? My daughter was "tested" for it, and the test consisted of a cardiac and aortic ultrasound to rule out an enlarged aorta. My doctor said he was 90% sure she had it, but when her test came back okay, it was ruled out. My nephew, I have been told, has Marfan's. He is classicly tall and skinny.

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    Quote Originally Posted by rohrer01 View Post
    So then, how do they make the diagnosis of Marfan's? My daughter was "tested" for it, and the test consisted of a cardiac and aortic ultrasound to rule out an enlarged aorta. My doctor said he was 90% sure she had it, but when her test came back okay, it was ruled out. My nephew, I have been told, has Marfan's. He is classicly tall and skinny.
    Here's the deal as it happened to us...

    I realized at some point my daughters might have Marfans. I first took them for the slit lamp eye exam which was normal. I asked the pediatrician and the orthopedic surgeon who both thought they did not have it. But the ped still gave me a referral to a pediatric cardiologist and a medical geneticist.

    The ped. cardiologist examined them, did the echo and determined everything was completely normal. His recommendation? Repeat the echo every other year until they are adults and then maybe drop down to once every five years after that for the rest of their life.

    Then we go to the medical geneticist for the mother of all exams. I inform her that the echo on both girls was completely normal. Her recommendation? Repeat the echo EVERY YEAR until they are adults and then drop down to a lower frequency (I think every 3-5 years).

    My kids do not now meet the diagnostic criteria. They have several skeletal findings including the major one of scoliosis >20*. Other than some mild though still abnormal stretch marks (nothing like the type ones you see for diagnosed Marfans which are thick and silvery), they have no other symptom (aorta/valve problems, dislocated lens, dura problems).

    So the bottom line as I understand it... one echo doesn't mean squat in terms of ever ruling out Marfans if the kid has a certain number of other indicators per both the pediatric cardiologist and the medical geneticist.

    Now it may be your daughter has so few other indicators that they thought one normal echo was enough to rule it out in her case, I don't know. All I know is my kids will be getting echos the rest of their life whether they are ever diagnosed or not. ETA: At one point I asked if there was an upper age limit after which you didn't need to worry any more an the answer was NO. So they could be 88 let's say and only then meet the diagnostic criteria. I also called this exact question into a doctor radio show and they confirmed there is no maximum age when you are in the clear. Hence the echos forever.
    Last edited by Pooka1; 05-16-2010 at 07:05 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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    Quote Originally Posted by rohrer01 View Post
    So then, how do they make the diagnosis of Marfan's?
    And now to actually answer you question!

    They make the diagnosis on the basis of having certain major and minor indicators and also I guess on a positive genetics result (I can't recall if there is a false positive rate.. there might be).

    Here's what the doctors use to diagnose Marfans to my knowledge...

    http://www.marfan.org/marfan/2406/Diagnosis/

    http://www.marfan.org.za/diagnosis.html
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #12
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    My son has the same winged scapula as you describe. He has idiopathic scoliosis for which he has had surgery. He inherited the winged scapula from his father and my daughter also has this condition. Neither father nor daughter have scoliosis.
    mom of Patrick, age 15 at time of surgery
    diagnosed July 2006 curves T58 L 38

    Nov. 2006 curves T72 L38
    also lordoscoliosis

    feb.2007 curves T79 L43

    Surgery May 16 2007
    fused T4 to L1

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    Hi Sharon, Yesterday I could not access the forum page.
    Quote Originally Posted by Pooka1 View Post
    It is not the case that one surgeon is right and another wrong. I think there is a range of opinion because nobody knows anything.
    .
    We think exactly alike.. but often they refuse to follow a more deep research. I'm always tempted to ask them to give me a written diagnosis ..
    What EXACTLY about your daughter's curve made the surgeon say the shape means idiopathic and not connective tissue disorder? I have never read on any scoliosis or Marfans website a single comment about connective tissue disorders having a characteristic shape to the scoliosis. I doubt it HIGHLY.
    He didn't specify me anything about the kind of shape. I'll ask him about Marfan's shape. I have never found anything about the different shapes also, there is no reason to believe it's true, but who knows?. I know he has a great experience in scoliosis and probably he have observed something..
    Unfortunately it is difficult to visit or speak without a great delay, but I will insist on the phone to get her answer and just when I know it, I'll comment you.

    To my knowledge, you CANNOT discard Marfans ONLY on the basis of not being tall. There are Marfans patients who are short. You need to find a pediatric geneticist who is experienced with diagnosing genetic connective tissue disorders. We have one and she took about 3 HOURS to go though all the tests and discussion of family history and such. It is the longest doctor visit I have ever been through BY FAR. The woman clearly blocks out her schedule when doing this type of work. Find someone who will take a detailed family history and do an appropriate work up before they discard a diagnosis.
    Last week I visited a geneticist (I don’t know if he is pediatric) and he asked me about family history but not focused in some disease as Marfan. I commented him about dystonia research and he said me that he need a neurology diagnosis (when I commented then about winged scapula) so then he could know what investigation path would be the best to follow. Now I’ll insist with E.D. and Marfan too.

    And remember with Marfans, ~25% of the cases are NEW mutations with NOBODY else in the family having Marfans. If my daughters have Marfans, it is almost certainly a new mutation.

    Yes you are right. There is nothing superficial about determining if a child has Marfans.

    And the other thing about Marfans is that just because you don't meet the diagnostic criteria now, doesn't mean you won't meet it later. My kids have to have their aortas monitored the rest of their life... Marfans can develop at ANY AGE. Just because you make it to your 40s let's say without meeting the diagnosis doesn't mean you can stop imaging your aorta. It's forever if you have enough indicators. The genetic test is not useful since at least 10% of people with Marfans test negate on the test.
    I’ll try to do the right tests and I’ll ask you for that.
    Muy importante y útil tu entendimiento del tema. Un abrazo grande y un beso a tus gemelas.

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    Quote Originally Posted by scoliboymom View Post
    My son has the same winged scapula as you describe. He has idiopathic scoliosis for which he has had surgery. He inherited the winged scapula from his father and my daughter also has this condition. Neither father nor daughter have scoliosis.
    Yes, much people without scoliosis has winged scapula too, but it seems to be a sign about weakness or some kind of collapse. I think it’s always present in muscular and tissue scoliosis, but I dont know if it is always present in the congenital (vertebra) too. I believe that if it's not present in that kind of scoliosis, it must to be that kind of sign without any doubt.
    Someone know that?

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    Quote Originally Posted by Pooka1 View Post
    What EXACTLY about your daughter's curve made the surgeon say the shape means idiopathic and not connective tissue disorder? I have never read on any scoliosis or Marfans website a single comment about connective tissue disorders having a characteristic shape to the scoliosis. I doubt it HIGHLY.
    Sharon, I talked about 2 minutes with the surgeon. Sadly could it be he only was referring to neuromuscular scoliosis. He said me that in those cases, there are an only and large curve. When I asked the shape in Marfan cases, he said me that my daughter has not Marfan and doesn’t respond in a clear way my question and made me feel he did not wanted to talk any more. At least in my country the medics requires something as a blind faith and they not tolerate any kind of doubt in what they says..

    Un saludo

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