From 23* to 13* to 32* ?????

[LaurensMom]

I am wondering if anyone out there has heard of anything like the situation that has happened with my daughter. She is almost 14 and was diagnosed last August with a 23* curve. We were told there was nothing we could do, just wait and see. Come back in four months and if the curve has progressed beyond 25* we will talk about bracing. I found it hard to accept "just wait and see" so I did some research and took my daughter to a pediatric chiropractor. I figured it couldn't hurt, maybe it would help and I know my daughter won't tolerate a brace well.

We went back to the orthopedic surgeon in December and were told her curve had decreased to 13*. This is very unusual but does happen from time to time. Whatever you are doing, keep it up. Come back in 6 months. Now that the curve has decreased it is highly unlikely it will increase again, since she is over a year past her first period and her major growth is behind her.

Well, we went back to the orthopedic surgeon last week for the six month check up and were shocked to find out her curve is now at 32*. We really went in feeling it would be a routine check up, hear words like "looks great, come back in 6 months" etc.
No one (the orthopede or her pediatrician) can explain this. Now they are talking about bracing her, but telling me in the same breath that many people would consider it too late for a brace because she is so far past her first period. They are also telling me she could regress, progress or stay at this point. No one really knows.

I am extremely confused. She has not followed any of the typical characteristics of scoliosis. If someone could tell me bracing her will make it better and is necessary, I would do it in a minute. I just am having a hard time accepting putting her through that when I have gotten so much conflicting information on bracing at her age and can't get any concrete answers on what may or may not happen if she is braced vs. nonbraced. For now, I have decided to double up on her chiropractor appointments and have her xrayed again in 6 weeks.

Has ayone ever heard of scoliosos progressing like this? rapid regression and then rapid progression?

JT

[Joe's Mom]

Idiopathic . . .

My son wears an orthotic for a foot deformity and when he was DX with scoli I taked to the orthotist about back braces too, just in case we needed one in future. He told me that curves can change dramatically for no known reason, that is why it is called idiopathic. He said he had seen kids with curves and the curves just went away; some got worse; some got better; some just fluctuated . . . there is no typical course - one of the biggest frustrations, in my view!

When you described your daughter, it reminded me of what he said.

[Mary Lou]

From 23* to 13* to 32*

JT....
I can't give you any advice on the changes in your daughter's back. Sorry. What I can tell you is that my 12 1/2 year old daughter has Kyphoscoliosis (started out at 36* in Aug. 2003) and was prescribed a Milwaukee brace in November. She wasn't wearing it and was prescribed a Boston brace in February. She is more than a year past her first menstrual period. From what we are being told she only has about one more year of growing. Her doctor stresses that it is very important to wear a brace while growing.
Good luck.
Mary Lou

[ellie]

change in curves

Hello Lauren's Mom,

I am 13 years old and I found out in January that I have scoliosis. The first doc. told me I was 26T 38L and he would brace me if I wanted or just wait for surgery! I went for a second opinion and he said I was 27Tl 32L and he looked at my hips on the xrays and saw they had not finished growing so I will be fitted for a brace on the 14. He said I might be wearing it for 2 years. My mom grew well into high school and well after her period started. So it seems to me you need to find her bone age. I think they can do this with her back exray or an xray of her hand. It seems to be worth a try, it beats surgery. They said your curve can also change depending on who takes, what time of day and if you are tired! My mom is having a hard time waiting!

Best wished to you and your daughter.

[Joe O'Brien]

Dear LaurensMom:

First of all, I want to thank you for joining the Forum and congratulate you for being our 1,000th member!

More importantly, I want to let you know that your experience is unfortunately not as unique as you may think, and your confusion and frustration is shared by thousands of other parents, including myself. As I have written in the past, (see my letter to NIH for our "Call to Action" Campaign for etiology research), trying to decide what to do for my three children with scoliosis has been more of a burden than my own four surgeries!

NSF provides many different services, but for the past 28 years our primary mission has been the early detection and treatment of scoliosis. Our current focus and advocacy is targeted towards; Enhancing our knowledge about the cause and progression of scoliosis; improving the standards and methods of screening and measurement; and replacing the incredibly frustrating"wait and see" approach with effective early intervention treatments.

Unfortunately, the decision you are faced with today has no definitive answer. Bracing is viewed as being patient unfriendly, has potential negative effects, and is limited in its success. Bracing however, does have scientific support, does have many successful cases, and is more widely accepted as the most effective non operative treatment for scoliosis. On the other hand, the most popular non bracing alternative treatments are generally less invasive, have less potential negative effects, and appear to be more accepted and tolerated by the patients who choose them. However while there is some anecdotal examples of positive outcomes, there is no scientific evidence to support any specific treatment , and there is a lack of standard of care and application.

You mentioned your daughter's age and the question about brace effectiveness due to her age. Did the doctor tell you her risser sign, or take a wrist xray to give you any specific indication of the amount of skeletal growth she has remaining?

Whatever treatment you choose, it is important to do whatever we can to try to keep curves below or as close to 30 degrees as possible to minimize the chance of progression in adulthood. The probability of her continued curve progression is primarily dependent upon her remaining growth. If she continues to grow then it is expected her curves will progress. If she indeed has finished growing then studies indicate that a curve of her magnitude is unlikely to continue progressing. In the first case a brace may help, while in the latter case it is not needed.

So, the bottom line is that there is no one answer or "right" thing to do. The decision you make is dependent upon your daughter's circumstances, your collective preferences, and the amount of perceived risk you are willing to take. A conservative approach would be to combine both a brace and some form of physical excercise until such time as there is clear evidence of completed growth.

As you have already seen for yourself, although scoliosis has common features and patterns, it is also unique for each person and can be unpredictable. In order to achieve better patient care for our children and future generations we need to join together to seek, and demand, more definitive answers.

[LaurensMom]

Thank You

Thank you everyone, for your responses.

I am taking Lauren for another xray in July and they will be checking her risser sign. I was told that it couldn't be determined from her most recent xray. If it can't be determined from the new xray, they are going to xray her wrist.

I don't know if anyone can help with this, but does anyone have a good reference for arguments against bracing? I feel I have heard from the pro bracing side and want to research the arguments against it. I keep hearing that there are people opposed to it, but can't seem to find information from that perspective.

Does anyone know if scoliosis can regress while braced? By wearing a brace you are holding it at its current degree? My concern is that she regressed before and I don't want to do anything to inhibit that from possibly happening again.

I am trying my best to research all sides of this before making a decision. This is difficult and I can't tell you how much I appreciate your responses and knowing others are going through the same thing.

Thank You
JT

[LindaRacine]

Hi JT...

I've never heard anything against bracing, except from the kids themselves. It seems to me that if you find a scoliosis specialist who is against bracing, you might want to be suspect of their motives.

Bracing is meant to hold the curves while the child finishes their growth. The curves almost always return to their pre-brace measurements after the brace treatment is discontinued. But, as Joe mentioned above, if the curves are kept around 30 degrees by the end of brace treatment, there's a reasonably good chance that they won't progress.

Regards,
Linda

[Nicole]

Hi JT,
I agree that if a Dr. is pushing surgery, I would be carefull of the motive (usually $$)
My daughter started at a 32*17* at risser 2, she has been in a brace 22hrs. a day for 9 months. Now she is 4* at risser 5 (almost fully grown) The brace that she is in pushes her in place with follow up visits, excersise and padding added inside the brace. It has not been fun for her but the results, painless and exciting. Her Dr. is truly a Saint- trying to help the children-without surgery even though he is a surgeon. You can e-mail me for more details suzirenee1@aol.com

[have5kids]

Hi Lauren's mom

I had to read your post because I'm also Laurens mom. My 11 year old daughter Lauren was diagnosed with scoliosis when she was 7. The curve progressed to 18* over the next 3 years, but the last time we went in the curve only measured 9*. I was shocked and am hopeful that she will no longer progress. I also know what it is like to have scoliosis as I wore a brace from age 12 to 16. Then 2 years ago at 35 had surgery to correct my lumbar curve. Don't let anyone tell you that this is not hereditary either because my mother had scoliosis surgery when she was 14. So my daughter is at least 3rd generation of scoliosis. Keep us informed about you daughters progress and We'll keep our fingers crossed for you.

[hannahsmom]

Hi, I just read your post and just wanted to add that if you do not feel comfortable with the info and treatment you doc is providing it is important to seek a second opinion. I did that with my daughter and the second doc did not hesitate to start a TLSO brace. The important thing is to keep the curve from getting worse and to prevent it from getting to surgical proporions. I bought the book "Scoliosis Sourcebook" and it was a great help, both with the decision to brace and getting a second opinion. You are your daughters advocate and the more informed you can be the better when going to the doctor. Good luck and God bless

Jeannette
(Hannah's Mom)