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Sue_NY
10-09-2004, 11:59 AM
Hi All

I'm the parent of a newly diagnosed teen with scoliosis. Just wanted to introduce myself and hope this forum will be a great source of information and support.

His curve has progressed from 22 to 29 degrees in tha last 8 weeks while we waited for the appt with the specialist. He's being fitted with a Boston Brace and we go back to the specialist in Nov with the Orthotist for an X ray.

Pertinent questions to ask at this appt? Any suggestions welcome.

Look forward to getting to know you guys

Thanks

Sue

Amymichele
10-20-2004, 10:21 AM
Welcome Sue,
This place has been a source of much encouragement and information for us. Glad that you found your way here as well.

Our 15 yr old daughter wore a Boston Brace from age 12-14.
Currently, we have her spinal fusion surgery scheduled for this June.
Her curve went from upper 20s to lower 4os while we were 'watching' it.
Then, try as we might, it went to about 53 degrees while she was wearing the brace.
Yet, the yrs in the brace WERE a positive thing. She had to face feelings that were not easy for a teen, and learn to overcome.
She got tons of love and support from her fam and friends, and really came to value the people in her life...which is always a good thing for a child of this age
;)
She learned to discipline herself, in order to use the brace to it's full potential, and felt really good about the amount of time she kept it on.
And NOW....she realizes that she did ALL that she COULD do, to hold the curve. This is very helpful to her in her emotional journey toward surgery, knowing that she followed the less invasive course first, and now this is her best option. Gave her time, ya know?...to work her way toward this..hoping all along of course, that the brace would do the trick!
HOPE is a wonderful thing.
Your son, at BEST, will be able to keep his curve from progressing. That CAN happen. Yet, even if.....there are benefits here for him.
Enjoy reading here Sue, and do not be discouraged!
Your son is going to be just fine:)
Hope to talk to ya soon. I'll try to check back here in the next few days.
Amy

lin515
11-12-2004, 05:02 PM
Hello,

I am new here as well, my eleven year old daughter has a rapidly progressing 43 degree thoracic curve. Doctor is putting her in a boston brace for 6 months to a year to allow for more skeletal growth, then will proceed with surgery. I would love to hear from anyone in similar situtation.

many thanks,
linda

susannajon
11-12-2004, 06:53 PM
Hi Linda,

My 13 year old daughter was diagnosed a year and a half ago with an "S" shaped curve. Her measurements at the time were 20 and 35. The doctors told us that even with bracing, there was an 85% to 90% percent chance she'd progress and need surgery.

Our daughter is extremely tactile. She refuses to wear pajamas when she sleeps and turns her t-shirts and underpants inside out so the seams won't rub. The idea of making her wear a brace 23 hours a day was intolerable, so we opted for a strength training study (Dr. Vert Mooney) instead of bracing. Unfortunately, her curve did progress (35 and 53), so we're facing surgery this summer.

All I can say is if what the doctor says doesn't make sense or doesn't feel right, trust your mother instincts and get a second opinion, even a third. Who's your doc, and what city are you in?

Susanna

lin515
11-13-2004, 02:43 PM
susanna,

thank you so much for replying. It isnt that I am doubting him, I am opting to have the surgery now rather then later. He basically said she will need surgery in her very near future, he wants to brace her to stop the curve from progressing further, but it will not correct it at all, I am wondering why wait I would rather her be on the road to recovery in 6 months instead of just beginning the tough journey I know she faces. I am very fortunate to live 20 minutes from manhattan and am seing Dr. Lonner who is a scoliosis specialist at a scoliosis treatment center, His credentials are excellent. This is such an awful thing and altough I know it could be worse and that I am not alone, I hate the thought of what her and all the other kids have to go through at such a young age. There are so many gray areas and wait and sees. She was diagnosed at the age of 9 with a 17 degree curve she is only 11 now with a curve measuring 43 and a zero risser. I used the wait and see approach and now I dont like what I see. I have to laugh though because my daughter much like yours hates tags, creases etc. This is why I dont think this brace thing will work out even if it is only for a few months. I know I am rambling on here but my brain cant stop thinking about this surgery.

Thanks for writing I look forward to hearing from you again!!
Linda:

Mary Lou
11-14-2004, 06:55 AM
Susanna and Linda...

From what I've learned, most surgeons don't like to do surgery until a child has reached or almost reached skeletal maturity. At a Risser 0, your daughter has a lot of growing to do yet. At 11, she probably hasn't even started her menstrual cycle yet, and therefore, she has a lot of growing to do. I know with my own daughter, she did a lot of growing and her spine did alot of curving in the few months after she started her period. She went from a Risser 0 to almost a Risser 5 from Aug. 2003-Oct. 2004. At 13, her bone age is that of almost 14 1/2. I think what the doctor is trying to do witht he brace, is not only getting her closer to skeletal maturity, but also wants to use the brace to try and hold the curves where they are now. Good luck.

Mary Lou

jhorste
11-14-2004, 10:41 AM
There seems to be a lot of inconsistencies in the way doctors treat scoliosis - it seems as though a 43 degree should have been treated a lot sooner. I know for me they may have treated too early (with today's guidlelines). I have 3 compensating curves (all around 29/35 degrees) and wore a brace for 4 years (many years ago) - they may not have needed treatment at all according to the guidlelines they use today

lin515
11-14-2004, 10:48 AM
Mary Lou,

That is what I seem to think as well, however my concerns are that since she is only at a zero risser with a larger curve and so much growing to do that the curve will get so much worse therefore getting less correction. Right now she has an extremely protuding right shoulder blade a left rib hump and a rotation in the pelvis at 17 degrees. She also is being studied for osteopenia a pre cursor to osteporosios as well as kidney nephrosis which is a blockage somewhere in the kidney. Our appt. with the urologist is tomorrow. She has not started menstruating yet. My other daughter didnt get first period until 14. My understanding is that there is still ample growing for up to 2 years after that. Can anyone answer what happens if surgery is done at an earlier age for example does it prevent full potential of growing etc. Also is anyone out there that has had the surgery at a younger age with less skeletal maturity. I appreciate any feed back.

Thank you,
Linda

lin515
11-14-2004, 11:03 AM
jhorste

I agree with you in something should have been done sooner the problem was partly my fault. In june her curve measured a 35. I opted at that time for intense physical therapy and chiropratic treatment for 6 months instead of night time bracing, which her first ortho recommended, at her last visit it soared to a 43, So I am partly to blame which absolutely kills me. I just felt that she would never handle bracing, she has slight breathing difficulty now. Every tag in every piece of clothing has to be cut out because she says they annoy her. Now 23 hour bracing is a must and my choices are gone. Surgery is in her future and I have lost all control of this.

Linda

jhorste
11-14-2004, 02:36 PM
Lin515,
My treatment was about 25 yrs ago and I know things have changed. My curves are obviously not that severe, comparatively.
It is not your fault; you chose a course that you thought would help and one that your daughter would be more comfortable with, now you have to something else. And you are! Who knows where I would be if my parents hadn't decided to put me in a brace. I am thankful for the treatment and have never regretted it. Hang in there!

jhorste

carolnj
11-14-2004, 02:55 PM
Linda, I just had to reply to your comment about being to blame and losing control. I know that as moms, we tend to blame ourselves for anything that happens to our kids, but you sound like you have made the choices that you felt were the best for your daughter, given the information that you had available to you at the time and the knowledge of your daughter (the tactile issues that would have made a brace torture for her). Surgery really should be that last resort and I think physical therapy was a great thing to try.

I struggle with control issues myself but I am learning that when it comes to most things - we have no control. We can educate ourselves, we can go to specialists who are trained to handle these issues and then we have to make an educated decision, taking all aspects into consideration.

What is the name of the scoliosis treatment center you went to in NY? We were just in to see Dr. Boachie as my 16 year old son is also facing corrective surgery.

Carol

Mary Lou
11-14-2004, 02:59 PM
Linda....

Please try not to blame yourself. I know, as Moms we always think we should have known there was something wrong with our children. I felt that way in the beginning and still do even now. Before her diagnosis, my husband would stand behind her and pull her shoulders back and she would tell him she couldn't. My daughter has a condition called Charcot-Marie-Tooth (CMT)disease and no one in my husband's family ever told me that Scoliosis or Kyphosis, my daughter has both, so therefore she actually has Kyphoscolisis, is a symptom/side affect of CMT and there are atleast four generations affected with CMT. I could play the blame game, but it won't change anything. I took her to her doctor for yearly checkups and he only diagnosed her at her 12 y.o. checkup. He is a trained doctor and couldn't detect it! No one ever tells us what to look for with our daughters.

As a Mom, we have the tough job of trying to what is right for our children. My husband is very involved, but it is me who takes her to all of her doctor appts. Also, I was the one who had to fight with her to wear her Milwaukee and then her Boston brace. We tried both braces, but being in Middle School and having to be "different" from everyone else wasn't easy and I understood that. If I had been harder on her and made her wear the brace 23/7 would we be facing surgery now? Maybe not, but I personally feel she still would have progressed. She had started her period four months before being diagnosed and she was only a Risser 0. A full year later she is finally a Risser 5 or close to it. Even with her being almost done growing, her cuves continue to increase. Therefore, I think without surgery her curves would continue to progress and I would rather have the surgery done now rather than wait and get less correction. If she wasn't so close to being skeletally mature I might have waited.

Trust yourself. You are your daughter's best advocate. And please, try not to blame yourself. You know you chose physical therapy and chiropratic treatments because you thought it was what was best. Don't doubt yourself. I know your daughter will thank you someday for trying everything before going right to surgery.

If you feel you want to talk, feel free to send me a personal message or e-mail. Please include this forum or something in the subject line so I don't delete it.

Mary Lou

lin515
11-14-2004, 03:34 PM
To all of you who answered my previous posts I cannot express my gratitude. You are wonderful people who I know understand what I am feeling and said what I needed to hear. My daughter Amanda is currently being treated by Dr. Baron Lonner, this was my first visit to the scoliosis treatment center in Manhattan. She was previously seen by another ortho at the Hospital for joint disease which is where she will be having her surgery when it is time. I was glad to read about the girl who went from a 0 risser to a 5 in such a short time. I want the surgery to be in the past and not in the future. She is 11 years old weighs 58 lbs. and stands at 52 inches, I feel like it will be forever before she starts to mature. I did try other things to avoid surgery but now that it is inevitable I dont want to wait. It is going to be a long 6 months to a year which is when the doc seems to think we can do it.
regards to all who took the time to write

lin515
11-14-2004, 03:34 PM
To all of you who answered my previous posts I cannot express my gratitude. You are wonderful people who I know understand what I am feeling and said what I needed to hear. My daughter Amanda is currently being treated by Dr. Baron Lonner, this was my first visit to the scoliosis treatment center in Manhattan. She was previously seen by another ortho at the Hospital for joint disease which is where she will be having her surgery when it is time. I was glad to read about the girl who went from a 0 risser to a 5 in such a short time. I want the surgery to be in the past and not in the future. She is 11 years old weighs 58 lbs. and stands at 52 inches, I feel like it will be forever before she starts to mature. I did try other things to avoid surgery but now that it is inevitable I dont want to wait. It is going to be a long 6 months to a year which is when the doc seems to think we can do it.
regards to all who took the time to write

susannajon
11-14-2004, 06:16 PM
Linda,

She is so tiny! It must be so scary to think about surgery, but I totally understand wanting to get it over and done. Don't beat yourself up! I totally understand what it's like to have a kid who is totally tactile. When our daughter was diagnosed, we were told a brace 23/7 was her only chance, and then less than 10% it would prevent the need for surgery. She won't even wear PJ's to bed, and turns her socks inside out so the seams won't rub, so a brace??? We opted for an experimental strength training study. Didn't work, but it was better than sitting by and doing nothing, and she felt better and stronger and in less pain.

Hang in there and feel free to PM or e-mail any time you need support.

Susanna

lin515
11-14-2004, 06:59 PM
susanna,

I have a few questions for you i tried to email but it wouldnt let me. I see your daughter is 13 and you are looking at surgery in the summer. she is not in a brace now? do you know what her risser is? are they letting you know what kind of correction they can achieve? I too am thankful i did extensive physical therapy she has gained so much strength and flexibility are you still doing that to prepare for surgery? Thanks a million

Linda

susannajon
11-14-2004, 07:51 PM
I have sent you a PM so we can tak offline. Susanna