help

[flerc]

As I said in http://www.scoliosis.org/forum/showthread.php?t=10151 I'm looking for parents with a daughter (or son) with a severe scoliosis and growth surely finished at all.
We live in Argentina and probably there not exist here other case of an adolescent with a curve >50º without fusion, so I have never contact another father or mother looking for conservative solutions with so sever curve.The same I could say about Spain. Surely there not exist another parent in my conditions in this forum too, but if you know about someone out, please let me know.
Of course is good to contact parents in different conditions too. Maybe we could find answers for many questions, so important for all of us.

Thanks in advance!

[Pooka1]

There are at least two parents who post here with daughters whose curves are in the 60's as far as I know. One is posting recently and the other hasn't posted in a while. Both refuse surgery at this time last they wrote.

There are probably others here who are in your situation that I don't know about or who just read and don't post.

I doubt you are the only parent in Argentina in that situation!

Can I ask why you don't want the surgery?

[pmsmom]

As I said in http://www.scoliosis.org/forum/showthread.php?t=10151 I'm looking for parents with a daughter (or son) with a severe scoliosis and growth surely finished at all.
We live in Argentina and probably there not exist here other case of an adolescent with a curve >50º without fusion, so I have never contact another father or mother looking for conservative solutions with so sever curve.The same I could say about Spain. Surely there not exist another parent in my conditions in this forum too, but if you know about someone out, please give they my email: flclerici@gmail.com
Of course is good to contact parents in different conditions too. Maybe we could find answers for many questions, so important for all of us.

Thanks in advance!

Welcome to the forum.

Have you also tried taking your child to scoliosis specialists in your area? Here is some information from www.srs.org:

http://srs.execinc.com/edibo/PublicDirectory

Take care,
Marian

[pmsmom]

I should add that once you get to this link, click on "find a specialist," then agree to the terms, then once you click on that, you will be taken to a page where you can do a "geographic and specialty search."

Type in your country and specialty and hit the search button and you will come up with several names of surgeons in your country.

Hope this helps!

[flerc]

There are at least two parents who post here with daughters whose curves are in the 60's as far as I know. One is posting recently and the other hasn't posted in a while. Both refuse surgery at this time last they wrote.

There are probably others here who are in your situation that I don't know about or who just read and don't post.

I doubt you are the only parent in Argentina in that situation!

Can I ask why you don't want the surgery?

Of course you can ask me what you want. I cannot imagine as I said once, nothing more direct and effectiveness to stretch the column and to keep it straight than surgery at least in theory, but I think risks are highs, even all greats improves of last years.
I cannot see fusion as other kind of surgery as appendicitis. If serious complication arises after that kinds of surgery, surely nobody would have any doubt about it was a matter of bad praxis. But I have heard many times about complications arises just in the rehabilitation period or after a short time, and never I have heard of bad praxis, so I think that even a successful surgery ( done in the most professional way), don't assure a real success. Risk is a matter of probability and damage. I could agree that probability of a successful surgery solution is very high, but is impossible to be sure before it is done. So I think that my responsibility is to try with solutions of lower risk. But of course it must to be effective, otherwise would imply serious risks too.

The only scoliosis's forum I know in the spanish spoken world is the Spain's forum, so many Argentines writes in that forum . It's absolutely impossible to know a parent in my conditions trying conservative methods in this forum and I believe it would never exists one, at least for a long time. I have write a request like in this thread and nobody never replied. Conservative solutions are tried for parents only under 35º or perhaps 40º. If after brace curve increases some degrees over that range, nobody think in conservatives methods.
I have never heard about any other adolescent over that range without fusion in my country. It´s true that probably exists one, but Internet is the only way I know to find what I'm looking for.

Sharon, muchas gracias por contestarme y como siempre, muy grato hablar contigo
Hasta muy pronto!

[flerc]

I should add that once you get to this link, click on "find a specialist," then agree to the terms, then once you click on that, you will be taken to a page where you can do a "geographic and specialty search."

Type in your country and specialty and hit the search button and you will come up with several names of surgeons in your country.

Hope this helps!

Thanks pmsmom. I know all those surgeons, they are ones of the most famous in my country. In fact I have not visited all of them but I know that surgeons in Argentina like in so many other countries thinks that over (at least) 50º, curve must to be reduced (I agree) and nothing could be more effectiveness for that than surgery (I also agree), so they not consider any other kind of solution, as I'm looking for. In fact it sounds so logic than nothing more than a surgery solution could come up from a surgeon.

[ArabianFancy]

HI,
My 12 year old daughter Mandy had a 51 Thoracic and 63 lumbar curve and had surgery in January. I could not see any options for her other than surgery. I would be glad to talk to you about her . She is doing AMAZINGLY well and has no complications at all.
Gina
See her story here
https://www.caringbridge.org/visit/mandydupree
Edited to add, I see that you are looking for NON surgical options , sorry I can't help you there !)

[flerc]

HI,
My 12 year old daughter Mandy had a 51 Thoracic and 63 lumbar curve and had surgery in January. I could not see any options for her other than surgery. I would be glad to talk to you about her . She is doing AMAZINGLY well and has no complications at all.
Gina
See her story here
https://www.caringbridge.org/visit/mandydupree
Edited to add, I see that you are looking for NON surgical options , sorry I can't help you there !)

Thanks ArabianFancy anyway, I'm happy for you.

[leo]

Con usted desde Puerto Rico

Estimado flerc:

Escribo desde San Juan, PR y me uno a sus preocupaciones, aunque mi caso es distinto; sobre todo, en la severidad de la curva y la edad de la niña. ( I better write in English for the benefit of the forum) I totally feel on the same situation as you regarding traditional medical methods and a lack of holistic perspectives in the Hispanic (especifically, Puerto Rican island) world. My daughter is 12 and has a 22 degree thoraxic-lumbar curve. She was 25 degrees in August 09 and was recommended by the ortho to use the TLSO. Looking for other alternatives, we, instead, went on to a Pilates specialist and certified physical therapist in Miami, and since September she has combined twice daily specific Pilates exercises and chiropractics ever two weeks. In February 2010 she was in 22. We know we shouldn't rely only on exercises and that she should be needing a brace during her upcoming growth period, but we keep denying the use of a 23 hours a day fixed brace. She is an extremely kynetic girl; she dances ballet and jazz, and truly loves movement. And the heat and humidity in the island will make it really uncomfortable to be wearing the brace all day long. We are exploring Charleston brace and Spinecor and no one in PR knows too much about these methods. It is TLSO, and that's it. We have a lot of work to do... and still, feeling lonely too. So, pretty much of this message is just for you to know you're not alone and hope we can make good decisions for the benefit of our daughters.

Saludos cordiales,

[flerc]

Amigo Leo, te agradezco muchísimo lo que me decís y me complace mucho hablar con alguien de PR y con tu visión de las cosas, efectivamente tan diferente a la del mundo hispano.
You are the first I know in the Hispanic world 'disobeying' what doctors recommended (at least about scoliosis) .. is something so difficult to do, but or responsibility as parent is to do what we think and feel we should to do and not to follow blindly at nobody, as people in this part of the world believe they should to do.
Pilates es visto como lo mejor alternativo en PR? In Argentina, GPR (Rpg Reeducación Postural Global) is seen as the best of the alternatives methods.

Un abrazo grande y por favor tenéme al tanto de como sigue tu hija.

Fer

[Karen Ocker]

Pilates is great ---but---

Pilates is excellent for strength and pain relief but it did not stop my curves from progressing or correct my curves. I did it for several years before surgery. I was in better condition to undergo the surgery and had a faster recovery.

I have a machine at home and a personal Pilates teacher. I still love that disclipline and now do modified forms based on my fusion.