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flerc
05-14-2010, 07:03 PM
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

Pooka1
05-14-2010, 07:19 PM
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.

flerc
05-14-2010, 08:24 PM
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?

Pooka1
05-14-2010, 08:52 PM
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.

leahdragonfly
05-15-2010, 09:44 AM
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.

flerc
05-15-2010, 07:11 PM
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.

flerc
05-15-2010, 07:23 PM
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.

Pooka1
05-15-2010, 07:39 PM
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.

rohrer01
05-16-2010, 12:01 AM
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.

Pooka1
05-16-2010, 06:55 PM
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. :eek: 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.

Pooka1
05-16-2010, 07:01 PM
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

scoliboymom
05-17-2010, 06:55 AM
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.

flerc
05-17-2010, 09:13 AM
Hi Sharon, Yesterday I could not access the forum page.

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 donít 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 Iíll 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.

Iíll try to do the right tests and Iíll ask you for that.
Muy importante y ķtil tu entendimiento del tema. Un abrazo grande y un beso a tus gemelas.

flerc
05-17-2010, 12:03 PM
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 itís 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?

flerc
06-03-2010, 09:55 AM
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 doesnít 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

Karen Ocker
06-03-2010, 05:22 PM
When there is a hump in the high thoracic region-from scoliosis-, under the scapula, a "winged scapular" results.

flerc
06-04-2010, 01:32 PM
Thanks Karen, may be you are right, it takes sense thinking in the convex side of the curve. But why other winged scapular in the concave side too?. Winged scapulars disappears after fusion? If not, other should to be the reason.
I think they are the symptom of some kind of weakness, that sometimes leads to scoliosis.
I think is a fact that winged scapulars exists in every collapsed pneumatic skeleton (as occurs in kids with CP). So is logic to think that this collapse might to be the cause of scoliosis, but ABR people seems to be the only ones in the world knowing about this.
It seems for me to be a taboo issue for any other professionals.

Regards

txmarinemom
06-09-2010, 01:12 PM
Just tossing this in the mix ...

A weak anterior serratus muscle (or damaged long thoracic nerve) can also allow the scapula to wing - scoliosis or no scoliosis. If your physician okays it, there are exercises to do that can help stabilize the scapula.

flerc
06-09-2010, 08:52 PM
Thanx txmarinemon, strengthen the serratus might stabilize the scapula, but I'm not sure if it could help more for an cosmetic issue. I'm absolutely sure she has the pneumatic skeleton collapsed. The distance between your chest and back is minimal, I think is a half it should to be.
I think ABR people should to be right.

txmarinemom
06-09-2010, 10:16 PM
'm absolutely sure she has the pneumatic skeleton collapsed.

How are you "absolutely sure"?

flerc
06-09-2010, 10:56 PM
How are you "absolutely sure"?

Abr people told me about some signs of this as winged scapulas, clavicles inclined and other ones I don't remember now. But the main sign for me is the reduced volume I see in my daughter.

txmarinemom
06-09-2010, 11:02 PM
Abr people told me about some signs of this as winged scapulas, clavicles inclined and other ones I don't remember now. But the main sign for me is the reduced volume I see in my daughter.

flerc,

How do you gauge "reduced volume"?

flerc
06-09-2010, 11:12 PM
In fact I don't measured it, I only observed it. It's quite evident it's lesser the volume of her friends of same age, height and no much more weight (she is thin)

txmarinemom
06-09-2010, 11:20 PM
In fact I don't measured it, I only observed it. It's quite evident it's lesser the volume of her friends of same age, height and no much more weight (she is thin)

flerc,

Has any doctor - of any type - supported your observation? Does your daughter observe the same?

How have you compared her to her peers?

flerc
06-09-2010, 11:50 PM
How have you compared her to her peers?
Yes, her friends. I think is great the difference.
I think the doctor said us the same in other words, when she put her fingers behind the scapulas of my daughter and then showed how impossible is to do the same with me. She told about muscular weakness but she also said something like my back is much denser, compact, robust..

txmarinemom
06-10-2010, 12:14 AM
Yes, her friends. I think is great the difference.
I think the doctor said us the same in other words, when she put her fingers behind the scapulas of my daughter and then showed how impossible is to do the same with me. She told about muscular weakness but she also said something like my back is much denser, compact, robust..

Okay ... so what I'm asking now is how did you make the jump from "muscular weakness" to "pneumatic skeleton collapsed"?

I think what concerns me most is your previous post:

"Abr people says that is a symptom of a collapsed pneumatic skeleton. I think is always present in children with cerebral paralysis. "

Who *are* the "Abr" people? Yes, I've seen their website. Do you realize they have no documented experience with scoliosis?

Does your daughter has Cerebral Palsy? If so, I missed that - but I'm trying to understand.

Pam

flerc
06-10-2010, 02:36 PM
Pam, my daughter has not CP. I decided to suspend a muscular therapy of this doctor, but Iím really so worry for what she said about the muscular weakness. I think she talk about muscular weakness, because nobody manages the concept of pneumatic skeleton, just only Abr people.
They have groups around the world in many countries. Argentina is one of them.
As I said to Sahron http://www.scoliosis.org/forum/showthread.php?p=101106#post101106
I know that people, I assist to conferences.. I can not doubt about what they do even I can not be sure if it could works in an idiopathic scoliosis.
But I think it should to works too. How much, I donít know. They say that a cerebral event triggers in kids with CP the beginning of the collapse of the pneumatic skeleton (PS ). This collapse progress, leading in many cases to the death. Abr seems to be the only one choice, at least in so many cases. So many parents said this to me.
Abr people says that the collapse of the PS is the cause of scoliosis also in idiopathic ones. The fact is that kids with the most terrible collapse of the PS that can be imagined, improve it and the scoliosis too. So, I think is logic to suppose that it can improve the PS in idiopathic too, and therefore the curve.
I think that regardless good intentions, every therapy is a business. Business has her own rules. It would be so reasonable that some kind of business be focused in same kind of target market. In the case of ABR this is the kids with CP, not with scoliosis.
But also may be they only can restore the PS of PC kids. So, as I said to Sharon, Schroth, SEAS or RPG could be unuseful therapies, but we can not forget muscles. So, we can not forget PS.
It would not be the first time I see a concept only knowed by the founders of some discipline. I think it also occurs with muscular chains and Mezieres.

Pooka1
06-10-2010, 05:09 PM
Yes, her friends. I think is great the difference.
I think the doctor said us the same in other words, when she put her fingers behind the scapulas of my daughter and then showed how impossible is to do the same with me. She told about muscular weakness but she also said something like my back is much denser, compact, robust..

Fer, there are any number of legitimate medical conditions for ALL you daughter's symptoms... thin body, low muscle tone, loose joints, etc. that I don't know why you leave the world of medicine for an answer that isn't scientific. They have many possible answers for this set of symptoms. My daughters fit that set and they are hypermobile with a possibility they might have emergent Marfans. No need to talk about pneumatic skeleton collapse to know what's going on here.

flerc
06-11-2010, 12:50 PM
Sharon, may be you are right, I donít know. In my country is difficult to do tests, because we need the order of a doctor. Surgeons refuse the idea she could has Marfan, so is so difficult for me to get this order, buy Iím trying. Iíll prove with rheumatologists too.
She is thin, itís a sign of Marfan, but I know other thin kids, I remember how much thin I was, but my back was never sunken as my daughter. This is a so significant feature for me. Other sign of Marfan seems to be neumotorax. This could explain what I see, but it must to be detected in x-ray as I knows.
Any way I think this collapse should to be reduced. I believe if she would have a much more robust back, her scoliosis would improve. I donít know if she could reduce degrees, but I really believe the risk of progression would be reduced.
I donít know all the factors determining the thickness of the back, (the distance between back and chest). Surely lungs and other organs, connective tissues as fascias.. all conforming the pneumatic skeleton. I donít know how to reduce so great collapse.
Someone should to know. Iím not sure the only way could be a special stimulus to the smooth muscles, even maybe the only way in kids with CP..
The physio donít agree with swimming but weíll begin tomorrow any way. I can not imagine any more.

Gracias por los consejos y por escuchar.

flerc
06-16-2011, 12:26 PM
I donít know how frequent are, but I think that there are different kinds of IS with different etiologies. I believe that in one of those etiologies, the winged scapulas are the outcome of a thin thorax in the sagittal plane, with the hollow back, as the first photo http://www.efisioterapia.net/articulos/leer.php?id_texto=329

I believe that in that kind of back, is inevitable this kind of scapulas, because there are not nothing between them. Surely ABR would be at least one of the best therapies that could be performed. No any doubt about a collapsed Pneumatic skeleton. But what could happen if we expand the rib cage? I believe that this hole between the scapulas should to be filled in some way, the PS would not be so collapsed.

Physicians say that strong back muscles are needed to stabilize the curve, so swimming is the best that we can do. (good luck in other words)
I had to realize by myself that strong muscles have very little to do for that purpose (maybe except the related with rotation) but in some sense, physicians are right, but not because what they say. Swimming is good to expand the rib cage, but how so much? And we cannot forget the risks. I think this exercise is more effective in order to expand the rib cage and I think that not have any risk, at least in a flexible spine http://foro.eliteculturismo.com/encuestas/pull-over-indicado-para-ensanchar-la-caja-toracica-mito-o-verdad-18609/ It seems that is used to correct the pectus excavatum http://www.pectusinfo.com/board/file...d=8289&aid=198

But again the limitations in adult age seem to arise. Ribs donít grow any more so it takes sense to say that is not possible to expand the rib cage. But what about the sternum? Iím almost sure my height is the same that when I was 17 years old. But after 2 years of a hard practice of boxing, my rib cage had a very significant growth, and I expended so many hours all weeks with an exercise very similar.

Again is all a matter of Riser? Itís difficult for me to believe that.