Help!

[flerc]

Hi, I’m an argentine father of a pretty girl of 16 years old. I hope you could understand my poor English.
She has as a severe scoliosis, but we are looking for a non surgical treatment. It would be great for me to contact with parents of daughters in similar conditions, seeking for the same kind of solution.
I want to reduce her curve all that it could be possible to reduce.
I’m evaluating a lot of different alternatives like ABR (Advanced Biomechanical Rehabilitation), SpineCor, Fed Machine, Global Postural Re-education (GPR), EDF (Cotrel), Feldenkrais …, but I feel very bad with myself because after one year of investigation, I could not find the knowledge I think necessary for select the best solution (surely a combination of treatments) for her.
I think that as in any kind of problem, exists some facts, that could not be ignored for arrive to a satisfactory solution.
I have contacted with a lot of people in the Spanish forum in www.escoliosis.org but even I have known good people, it seems that nobody with a daughter like mine has much interest in the Spanish spoken world to know that facts, that should lead to the best choice in each case.

I really feel a great loneliness. I’m not a health professional and I had not a medical in my familiars or friends. It seems I’m fighting in the darkness. I’m sure medicals professionals must to know that facts I’m looking for. I have elaborated some questions, which should leads to those facts. I have asked a lot of doctors in my country, but the most refused to answer those questions and the so few answers I had recollected are contradictorys or inconsistents.
If anyone (father or not) wants to know that facts too, or knows somebody that could answer my questions, please make me know writing in those thread.

Thanks in advance!

[aterry]

I'm sorry you are feeling lonely in your search to make the best choices for your daughter. I have a 17 year old daughter and I also feel overwhelmed. Like you, I have gotten conflicting information from doctors and have not learned very much that is of help. Even so-called experts don't seem truly knowledgeable. At present my daughter is doing physical therapy but that's more for pain and to try to hold off progression. You could spend more time on this forum reading the threads that discuss non-surgical approaches and research.

[titaniumed]

Flerc

Your English is pretty good. You will get some of your questions answered here, there are quite a few of us.

I was wondering how severe is your daughters scoliosis? Do you have x-rays? Do you know her Cobb angles?

Are you in Buenos Aires? Have you seen a scoliosis surgeon?

Scoliosis is a difficult subject. That’s why we are here.

Nice to hear from someone in Argentina! Welcome.

Regards
Ed

[flerc]

I'm sorry you are feeling lonely in your search to make the best choices for your daughter. I have a 17 year old daughter and I also feel overwhelmed. Like you, I have gotten conflicting information from doctors and have not learned very much that is of help. Even so-called experts don't seem truly knowledgeable. At present my daughter is doing physical therapy but that's more for pain and to try to hold off progression. You could spend more time on this forum reading the threads that discuss non-surgical approaches and research.

Aterry, I don´t know if the scoliosis of your daughter is sever too, but thanks for let me know I’m not the only one looking for knowledge and receiving conflictive information from doctors and health professionals.
I think the only possibility is having a so close relationship with a doctor .. Do you know someone?

P.D : Does we should posts here http://www.scoliosis.org/forum/forumdisplay.php?f=100 ?

[Pooka1]

Hola. I will try to answer your questions.

Hi, I’m an argentine father of a pretty girl of 16 years old. I hope you could understand my poor English.
She has as a severe scoliosis, but we are looking for a non surgical treatment. It would be great for me to contact with parents of daughters in similar conditions, seeking for the same kind of solution.
I want to reduce her curve all that it could be possible to reduce.

What do you mean by advanced? What are her curve angles? That will determine [partly what treatment is suggested. Also, are her curves getting bigger over time?

I’m evaluating a lot of different alternatives like ABR (Advanced Biomechanical Rehabilitation), SpineCor, Fed Machine, Global Postural Re-education (GPR), EDF (Cotrel), Feldenkrais …, but I feel very bad with myself because after one year of investigation, I could not find the knowledge I think necessary for select the best solution (surely a combination of treatments) for her.
I think that as in any kind of problem, exists some facts, that could not be ignored for arrive to a satisfactory solution.
I have contacted with a lot of people in the Spanish forum in www.escoliosis.org but even I have known good people, it seems that nobody with a daughter like mine has much interest in the Spanish spoken world to know that facts, that should lead to the best choice in each case.

You are a very good father or researching all those treatments. Do any of them have evidence for reducing severe curves?

I really feel a great loneliness. I’m not a health professional and I had not a medical in my familiars or friends. It seems I’m fighting in the darkness.

I think everyone feels that way at first. Maybe joining our group like you have done will help you feel less lonely. There are other parents of children who are going through what you are going through.

I’m sure medicals professionals must to know that facts I’m looking for. I have elaborated some questions, which should leads to those facts. I have asked a lot of doctors in my country, but the most refused to answer those questions and the so few answers I had recollected are contradictorys or inconsistents.

You might want to consider that some large curves cannot be helped by any conservative treatment. It is sad to say.

If anyone (father or not) wants to know that facts too, or knows somebody that could answer my questions, please make me know writing in those thread or sending me an e-mail to flclerici@gmail.com

Thanks in advance!

We have no orthopedic surgeons posting here but if you post your questions I am sure people will respond with what their surgeon has said. I don't know which facts you are talking about. Very little is known about scoliosis. You cannot get blood from a stone and the surgeons are just telling you what is known without making up stories.

Good luck.

[flerc]

Flerc

Your English is pretty good. You will get some of your questions answered here, there are quite a few of us.

I was wondering how severe is your daughters scoliosis? Do you have x-rays? Do you know her Cobb angles?

Are you in Buenos Aires? Have you seen a scoliosis surgeon?

Scoliosis is a difficult subject. That’s why we are here.

Nice to hear from someone in Argentina! Welcome.

Regards
Ed

Ed, thanks for make me feel welcome in those forum and for you said about my english (is not true as you are seeing or you’ll see). Yes, I live in Buenos Aires, but I’m not a typically man of this city. All people here make ever what the doctors say to do.
The right thoracic-lumbar scoliosis of my daughter is diagnostic like surgical by many scoliosis surgeons. In fact they only see the Cobb angle. They has not interest to know about nothing more for the diagnosis, as progression, pain, psychological damage.. nothing more than Cobb angle. As it is greater than 50° (56° in last x-rays) all possible analysis finished there. The x-ray of one year before was of 57°. I want she can to reduce 6,1 degrees more, so they will change the diagnosis.. it could sound ridiculous, but really I think it could be a significant difference, not only of course of what doctors would say. I think could be physics reasons (not only statisticals) like a critic angle relationed with the resistance of the column..
Doctors says that is impossible to reduce degrees after growth is finished, buy have never explained me why. Impossible for me means IMPOSSIBLE, not only difficult or statistically improbable.
Sorely is difficult to find the best without the right knowledge.

Thanks again!

[Pooka1]

The right thoracic-lumbar scoliosis of my daughter is diagnostic like surgical by many scoliosis surgeons. In fact they only see the Cobb angle. They has not interest to know about nothing more for the diagnosis, as progression, pain, psychological damage.. nothing more than Cobb angle.

Experienced pediatric orthopedic surgeons who work with scoliosis are concerned with EVERYTHING, not just the Cobb angle. It sounds like you should meet with an experienced pediatric orthopedic surgeon who works with scoliosis.

As it is greater than 50° (56° in last x-rays) all possible analysis finished there. The x-ray of one year before was of 57°.

It sounds like the curve is not changing over at least the last year. That is very good! If it stays there, and she has no pain and doesn't mind how she looks then I don't think a surgeon would operate on her. Progression must be shown unless the angle is much larger I think.

I want she can to reduce 6,1 degrees more, so they will change the diagnosis.. it could sound ridiculous, but really I think it could be a significant difference, not only of course of what doctors would say. I think could be physics reasons (not only statisticals) like a critic angle relationed with the resistance of the column..
Doctors says that is impossible to reduce degrees after growth is finished, buy have never explained me why. Impossible for me means IMPOSSIBLE, not only difficult or statistically improbable.
Sorely is difficult to find the best without the right knowledge.

I don't think an experienced pediatric orthopedic surgeon who specializes in scoliosis would say it is impossible to reduce that curve ~6*. I think it is very likely she can reduce the curve that much. The problem is that it isn't permanent and she will have to keep doing what she is doing the rest of her life to hopefully keep the curve from getting bigger again. And it may stop working after a while. Nobody knows.

[flerc]

Experienced pediatric orthopedic surgeons who work with scoliosis are concerned with EVERYTHING, not just the Cobb angle. It sounds like you should meet with an experienced pediatric orthopedic surgeon who works with scoliosis.



It sounds like the curve is not changing over at least the last year. That is very good! If it stays there, and she has no pain and doesn't mind how she looks then I don't think a surgeon would operate on her. Progression must be shown unless the angle is much larger I think.



I don't think an experienced pediatric orthopedic surgeon who specializes in scoliosis would say it is impossible to reduce that curve ~6*. I think it is very likely she can reduce the curve that much. The problem is that it isn't permanent and she will have to keep doing what she is doing the rest of her life to hopefully keep the curve from getting bigger again. And it may stop working after a while. Nobody knows.

Pooka1, It’s so nice for me to speak with you. Now I really not feel so alone. I’ll reply some questions in nexts posts

Thanks! I needed to heard some as you said.

[flerc]

Hola Pooka1, let me know if I using wrong some word or term, so you could not understand me.

In fact the surgeon is surely at least one of the 2 or 3 with most experience in scoliosis of my country and I’m sure is the least strict in surgeon’s criteria.
In fact he said that surgery is not necessary now, but he is sure that it would be before her 21 years.. he is sure that surgeon is the only possibility after 50º.
Other surgeons said me that surgery must to be now and told me that I am a bad father if I refuse that idea.
Surgeons in EEUU don’t think that? It would be a great notice for me.
If you understand Spanish mas o menos bien, and look in the spain forum.. mothers with adolescents of 40º or least are looking for the best fusion.. they are so respectful but they made me feel like a crazy.. nobody think in other possibility.

About evidence of reducing curves, I know by own experience what inexactly are x-rays, but.. here are some ones:
Fed: http://www.sastre-roca.com/casospracticos.html (14 years old 55º to 32º)

Gpr: http://www.rpg.org.ar/es/index.php?o...tico&Itemid=54
42 years old 50º to 40º

Edf:
(no x-rays) http://www.tesisenxarxa.net/TESIS_UB...TESISILVIA.pdf
http://cat.inist.fr/?aModele=afficheN&cpsidt=15144900

In fact I think the only ones in the world speaking about a definitely cure (without maintence), regardless the age or degrees are the ABR people:
http://www.abrtherapy.com/english.html

I know some parents and I have seen incredible cases, but not idiophatics.

Somebody said that is possible to reduce degrees but impossible maintain this reduction because the inter vertebral space wedge. As Sastre (Fed Machine inventor) has demonstrated, the traumatism in the concave side produced by more pressing, avoid the possibility to groth like the convex side, leading the growth of the curve.
It seems logic that if this wedge persist, then it would be impossible to maintain the reduction reached in a no surgical way.
Then, the first question I think must be that:

1) Is possible to recompose after growth is finished, the concave side of the inter vertebral side, so it could reach the same or similar height that the convex side, or the damage is irreversible?

After surgery, the 2 sides have similar height, but they are forced to maintain that height. Which is the state of the concave side in that case? Are it terrible damaged as Sastre says woud be in a scoliotic column? If it could be possible to undo fusion, what could happen with this concave side? It would be weak and the convex side strong, so column could not keep right?
I think that doctors must to know that.
I have more questions like that but concerned with another factors.

Un saludo

[dailystrength]

Hi. I have a 49 degree right lumbar and 34 left thoracic, and it has held steady in the past year with exercises. My surgeon will not do surgery on me, he said. He is an expert in scoliosis research and said the outcome is not always better due to degeneration above and below the fusion. He said even if my curve gets worse, it could be better than surgery. So far I am doing okay.

[flerc]

Hi. I have a 49 degree right lumbar and 34 left thoracic, and it has held steady in the past year with exercises. My surgeon will not do surgery on me, he said. He is an expert in scoliosis research and said the outcome is not always better due to degeneration above and below the fusion. He said even if my curve gets worse, it could be better than surgery. So far I am doing okay.

dailystrength, you are just before the limit. If you live in my country surgeons will expect one degree more for do surgery on you.. in fact only the more experienced, for the most 40 or 45 degrees is the limit.
Is so comforting for me to heard what your surgeon said.. I can’t belive it.. of course I don’t doubt on what you said.. we live in two different worlds without any doubt!.

I’m really grateful for saying me that.

[titaniumed]

Interesting methods used in Barcelona, Spain.

See page 293 for Sastre treatment using FED unit in English.

http://books.google.com/books?id=y35...d=0CAkQ6AEwAA#

50-90Kg is one hell of a pull. Thats 110-190# Wow!

The Spanish sure does put a twist on this..... still very interesting.
There are a few links posted, still looking at all these.

Flerc
Is there a possibility that you might go to Spain? Are any of these methods being practiced in Argentina?
Ed

[Pooka1]

Saludo Flerc.

I lived in Puerto Rico for 3 years and was able to understand most of what was said in Spanish in my meetings by the end of the three years. But I cannot speak it well and I don't remember much from that time.

Hola Pooka1, let me know if I using wrong some word or term, so you could not understand me.

In fact the surgeon is surely at least one of the 2 or 3 with most experience in scoliosis of my country and I’m sure is the least strict in surgeon’s criteria.
In fact he said that surgery is not necessary now, but he is sure that it would be before her 21 years.. he is sure that surgeon is the only possibility after 50º.

Yes I think the reason he says she doesn't need it now is that she has been stable for at least a year. I am not a surgeon but I don't think they operate on stable curves even at the angle where your daughter is. If she has no pain then I really don't think they will operate. At least three people on this group had large curves that didn't progress for years and even decades. One woman had surgery not because the curve was getting bigger but because of pain.

Other surgeons said me that surgery must to be now and told me that I am a bad father if I refuse that idea.

Well, there are some reasons for surgery now but I don't think it is clear. I think some reasons to get surgery now might be to hope she can get a better correction and balance, she will have less damage to the spine (in the fused portion), she will look better if that is bothering her, etc. You should ask the surgeon ¿Por qué? it is necessary to have surgery now when the curve is not progressing.

Surgeons in EEUU don’t think that? It would be a great notice for me.
If you understand Spanish mas o menos bien, and look in the spain forum.. mothers with adolescents of 40º or least are looking for the best fusion.. they are so respectful but they made me feel like a crazy.. nobody think in other possibility.

I did understand Spanish mas o menos but not now unfortunately.

Usted no está loco. You are a great father for researching and caring. Each case is different. Do not compare with the other children.

About evidence of reducing curves, I know by own experience what inexactly are x-rays, but.. here are some ones:
Fed: http://www.sastre-roca.com/casospracticos.html (14 years old 55º to 32º)

Those are amazing corrections! Are they saying they are permanent? Are the second radiographs of when the person is in the machine? If that were true nobody would need surgery I think.

In fact I think the only ones in the world speaking about a definitely cure (without maintence), regardless the age or degrees are the ABR people:
http://www.abrtherapy.com/english.html

If they are right they will get the Nobel Prize in physiology/medicine. We will have to wait and see.

I know some parents and I have seen incredible cases, but not idiophatics.

Yes and many smaller curves will reduce or even disappear through doing nothing.

Somebody said that is possible to reduce degrees but impossible maintain this reduction because the inter vertebral space wedge. As Sastre (Fed Machine inventor) has demonstrated, the traumatism in the concave side produced by more pressing, avoid the possibility to groth like the convex side, leading the growth of the curve.
It seems logic that if this wedge persist, then it would be impossible to maintain the reduction reached in a no surgical way.
Then, the first question I think must be that:

1) Is possible to recompose after growth is finished, the concave side of the inter vertebral side, so it could reach the same or similar height that the convex side, or the damage is irreversible?

After operation, the 2 sides have similar height, but they are forced to maintain that height. Which is the state of the concave side in that case? Are it terrible damaged as Sastre says woud be in a scoliotic column? If it could be possible to undo fusion, what could happen with this concave side? It would be weak and the convex side strong, so column could not keep right?
I think that doctors must to know that.
I have more questions like that but concerned with another factors.

Surgeons know these answers. I do not.I think there is something called "wedge osteotomy" that will make the vertebra level again but I don't know why they don't just do that and not fuse.

What levels are in your daughters curve? Thoracic? Lumbar? Both? Which vertebra?

Recuerdos,
sharon

[Pooka1]

The x-ray of one year before was of 57°.

Do you have any x-rays from before last year?

[flerc]

Saludo Flerc.

I lived in Puerto Rico for 3 years and was able to understand most of what was said in Spanish in my meetings by the end of the three years. But I cannot speak it well and I don't remember much from that time.

I’m remembering English, you could try to remember Spanish, I could help you.

Yes I think the reason he says she doesn't need it now is that she has been stable for at least a year. I am not a surgeon but I don't think they operate on stable curves even at the angle where your daughter is. If she has no pain then I really don't think they will operate. At least three people on this group had large curves that didn't progress for years and even decades. One woman had surgery not because the curve was getting bigger but because of pain.

Fortunalley, at least since last year with GPR treatment I could say she has not any pain and the Currents Photos looks best than from that time. She feel good, and seems to be happy even she have some idea of the severity of her scoliosis.

Well, there are some reasons for surgery now but I don't think it is clear. I think some reasons to get surgery now might be to hope she can get a better correction and balance, she will have less damage to the spine (in the fused portion), she will look better if that is bothering her, etc. You should ask the surgeon ¿Por qué? it is necessary to have surgery now when the curve is not progressing.

They says that flexibility is lost through (current surgeon explain why this could be true) the pass of years, so fusion would be worst. They not said nothing about improve technology in the future.

I did understand Spanish mas o menos but not now unfortunately.

Usted no está loco. You are a great father for researching and caring. Each case is different. Do not compare with the other children.

Thanks, it great for me to hear that and to be in those forum!

Those are amazing corrections! Are they saying they are permanent? Are the second radiographs of when the person is in the machine? If that were true nobody would need surgery I think.

I think ther’s not into the machine. They says that only works during growing, not after. I think that results are similar to others methods using external forces without collateral damages as Spinecor seems to be.

If they are right they will get the Nobel Prize in physiology/medicine. We will have to wait and see.

Yes and many smaller curves will reduce or even disappear through doing nothing.

In fact these childrens with cerebral paralysis have all body deformed not only column and the progression is terrible!. Some fathers told me that without ABR treatment their sons would be death as doctors saids to him what would be happens.
They work over a concept absolutely ignored by any other treatment: the pneumatic skeleton.
I have read that a collapsed lung lead to scoliosis. Swimming is high recommended by doctors.. ABR people focus on organs, they see its as the guiltys not the victims.
It seems so logic that if the trunk is collapsed the column inside it would be collapsed too. In at least some kinds of neurological scoliosis I could say that it works. But in idiopathics? How could we know that?

Surgeons know these answers. I do not.I think there is something called "wedge osteotomy" that will make the vertebra level again but I don't know why they don't just do that and not fuse.

If I understand you well (I have difficult with some constructions) it’s the same I’m asking to. I spoke with somebody in my country asking for these surgery in scoliosis and without any explication said me that it could not works.
I have asked for the irrecoverable or not damage in these disks (avoiding surgery’s solutions) to many doctors and I have not a clear response. If you think they know that, please ask him. It’s a crucial point. Much questions could be associated with it, like if decompression could help (ever speaking after growth finished)

What levels are in your daughters curve? Thoracic? Lumbar? Both? Which vertebra?

Recuerdos,
sharon

Both, I'm not remebering now the number of vertbras, I' ll continue next

Muchas gracias!! Es un verdadero placer hablar con vos!