View Full Version : Worried and Confused

06-20-2005, 07:54 PM
Hello everyone, I am new and was hoping that someone might be able to help me. My son is 13 years old and was recently diagnosed with indiopathic scoliosis. We were told that his curve is at a 68* degree curve from
T-2 to L-6. He has been casted for a milwaukee brace but I found out today that it will be another week to week in a half before it is ready for him. I had to call the specialist back today because his pain level has increased for the past week and I am really worried about him. They have him taking 800mg of IBPro. three times a day. But it isn't helping him with the pain. Does anyone have any ideas of something that we could do to help him? The doctor told me that they don't want him taking and pain medication because it masks were the pain goes. They are sceduling a sooner appointment but I am at a loss. It is really hard for him he is having a really a hard time sleeping because of it. Which seems to me to be making everything worse. Will the brace help? The doctor hasn't said anything about surgery but I am worried that he will have to have surgery. I haven't found anyone on the forum with this degree of a curve. I know that everyone is different but if there is anyone out there that I can talk to I would be very greatful. Thank you all for listening to me vent. I really appriciate every thing.

Shelly :confused:

06-20-2005, 08:04 PM
i'm sorry to hear about your son, but he's not alone in a curve that high. I'm sure there are plenty of people on this board with curves as high as his and some even worse. My daughter is 15 and her curve before her surgery was 62. I know our dr. recommended surgery after her curve went to 50 degrees. The dr. had told us that after the curve hits 50 degrees it usually does continue to progress into adulthood. 68 Degrees is definitely a significant curve and your child only being 13. Is it possible that your dr. wants to try to hold the curve until your son gets a little older? I would get another opinion. Did you see a pediatric scoliosis specialist??
Good luck

06-20-2005, 09:59 PM
Thank you Jennifer. Yes, he is seeing a Pediatric Scoliosis Specialist. The doctor is suppose to be the best one in our state. I haven't heard anything bad about him only good things. This is all a new experience for us. I have been fighting with my son's pediatriction for about four years over the fact that something was wrong with his back but he wouldn't listen to me. I took him to see a chiropracter and was told that he needed to have x-rays because he has scoliosis and so I went back to his PCP and told him that I want Brett to get x-rays and to be checked for scoliosis. The x-rays were done and then more x-rays were done then we were told that he needed physical therepy and then the insurance company calls and tells me that he needs to go to see this scoliosis specialist. And here we are. The hardest part for me is seeing him in so much pain. I know what it is to be in pain all of the time (because of my right knee) and I don't like to see him like that.

Thank you for listening.

06-21-2005, 12:43 AM
What kind of pain and where is it that your son is having?
One of my curves was 68 and I had 2 Harrington rods in when I was 15. It corrected it to 18 degrees. I was in a Milwaukee brace before the surgery and it was hard to get used to sleeping in it, it seemed to make me more sore, and my curve continued to progress. I am surprised that with a curve of more than 60 degrees that they are not pressing surgery.
I find the most soothing thing for pain is lying in certain positions with a hot pad on various nerves/areas.
Oh yeah, and by the way, my husband's name is Brett!

Mary Lou
06-21-2005, 05:21 AM
Hi Shelly,

I'm sorry to hear about your son. It is a shame that doctor don't listen to Mom when we tell them something isn't right with our child, but that is all behind you now. It is time to look forward.

My 13 y.o. daughter is six months post-op. My guess for your son is that since he is only 13, he has a lot of growing to do, so therefore, that is probably why they are not pushing surgery at this point. Don't be surprised if they suggest surgery at some point, however, because usually like others have said, surgery is usually recommended when curves reach between 40-50 degrees. Most doctors try not to do surgery until the child is skeletally mature.

I would suggest at least a second opinion. Hang in there, you've found a great group of friends to help you through all of this.

Mary Lou

06-21-2005, 07:42 AM
Get a second opinion at a Shriners Hospital, if there is one near you. They also pay for everything, without using your insurance. My daughter is awaiting surgery and her curve was 69 degrees a few months ago, so you are not alone. She wears her brace constantly now (23/7) to support herself and relieve back pain as she awaits surgery. Her doctor at Shriners (2-3 hours drive from us) actually said the brace won't do that much to help her anymore and she could go without it since she is having surgery anyway. She chooses to wear it anyway, partly because she thinks it might prevent the curve some and mainly because without it her back hurts. Kris

06-21-2005, 08:29 AM
I am suprised that they are bracing with a curve over 60 * my daughter was at 42 and they said it would be ineffective for a brace. She had surgery 4 weeks ago and is about 85% back to normal. She is 16 and her curve measured 54 at surgery and is now about 15* . I know how difficult this is-we agonized over surgery for about 2 years- but in that time, her curve progressed 12 * and this was after her growth had stopped. We really had no choice. Good luck to you and your son.

06-21-2005, 10:48 AM
Hello everyone. Thank you for all of your support and experiences. It has helped me a lot to talk with you. I am glad that I found this site and the spinekids.com site they have been a really big help for me. My son hasn't been back on since he posted at spinekids.com but I think that he will start going there soon. I can hope so. He would like to find someone that lives in Arizona that he could talk to and maybe someday get to me. I told him that when we go back to the doctor then we will ask them to give his email addy and name to other boys or girls that he can relate to. I know that his friends will be understanding and will stick up for him and not let anyone pick at him. We live in a small community (only about 2500 people) and our school is K-8 and the kids are transported to high school which is 32 miles from home. Thanks again for listening everyone. I really am grateful to all of you. Your words of understanding and caring are more than I could have asked for.

Do your girls talk to you about how they are feeling and what changes if any they have gone through due to scoliosis? It is hard to get Brett to talk about how he is feeling he has always been really quite and kinda shy about things. I just don't want him to hold it in an then get depressed from it. It is even hard to get my husband to talk about it. He thinks that we should wait until Brett's brace comes in to talk about it. I just don't know what to do. I guess that it the mother in me.

Brett's pain is in his middle to upper back. While up and moving or just sitting the pain level is around 7. While trying to sleep the pain level is around 9. He has tried sleeping in all different positions to see if it helps but so far nothing is working. It is hard to see any child in pain but most of all your own and not to be able to do anything about it is harder.

Thanks again for listening to me talk. I think that it is helping me to get a better understanding of everything and it is keeping me from crying my eyes out. You're all great. :)

Mary Lou
06-21-2005, 04:30 PM
When Jamie was first diagnosed, she DID NOT want to talk about her back. She didn't want anyone to know about it and she couldn't understand why I needed to talk about her back. Now, almost two years later, she is the one who does most of the talking about her back! I think part of the not talking about it is just them being typical teens. Some of it is that they probably feel "different" from everyone else. Please continue to talk to your son even if he doesn't talk to you about his back, he will listen. Try what I did, mention things you've learned on the forum, or have read somewhere when you are in the car driving. They can't escape, so they have to hear at least some of what you are saying!

Mary Lou

06-21-2005, 09:18 PM
I have been and I will continue to talk to him as much as I can. I am really glad that I found you guys you have been really terrific. Tomorrow is one of our long drives to the valley so we will be able to talk about it as a family. His brother is 11 and I think it would be good for him to understand what is going on with his brother. The only problem with talking with him is he is my worry wart. LOL. Reno worries about anything and every thing. I hope that everyone is doing well today. Take care I will chat some more tomorrow night if I am not to tired from the trip.


06-21-2005, 09:30 PM
most doctors would suggest getting surgery by the time they reach 50 degrees. its best for him to get the surgery while hes young b/c if he gets it when hes older the recovery wll be more complicated. Also, if u end up never having the surgery, then when hes older the rib cage will move w/ the spine blocking the lungs and heart. It's best to get the surgery while its good timing.

Good luck!

Mary Lou
06-22-2005, 05:16 AM
I'm glad to hear that you're going to talk together as a family. I have a 12 y.o. daughter and we have included her in everything from day one. I think if you handle it the right way, you can keep the kids informed and not worry them too much.

Mary Lou

06-27-2005, 07:33 AM
Thank you to all of you. You have all been a really big help to us.

Brett is going back in today to see the doctor. He brace is also suppose to be in this afternoon. I found out the reason that it has taken so long for him to get. The Brace Specialist decided he wanted to see the x-ray's and talked with the doctor and they changed the brace to the TLSO Brace. I had called twice before to check on the brace and no one told me any of this. I had my husband call and he finds out all of the information. LOL

We are going to talk to the doctor about the surgery and find out all of the details about everything. I will let everyone know what happens. It will be tomorrow before I can post anything. We don't expect to be able to start home before around seven o'clock or eight o'clock tonight. It is a two hour drive to the doctor's office from home.

Again thank you for listening and for all of your advice and help. I am very greatful. :)

07-06-2005, 07:02 PM
My name is Lindsay and I was just recently diagnosed 4 weeks ago with scoliosis. With a 36 degree on top and bottom. I got the brace 2 weeks ago and its helping so much! :) Before i got it I had horrible back pain and it hurt to lay down. So my parents got me a memory foam mattress it works GREAT!!! Because it molds to your curves! Well i hope you take my advice on buying that mattress for him and best of luck! :p

Lindsay :D

07-10-2005, 08:22 AM
Sorry it has taken me so long to post again. Brett returned to the spine specialist and we found out that he doesn't have Idiopathic Scoliosis he has Scheuermann's Kyphosis. This is why they are not talking about surgery. He finally got his brace on Thursday morning. The reason that it took so long was because the brace specialist wanted to recast him because he wanted to put him into a Boston Brace instead of the Milwaukee Brace. I still don't know why they didn't call and have us bring him back in sooner to do the recasting. It seems to be helping him. He says that when he takes it off for the hour a day that he is missing something. The brace specialist told us to make him wear it to bed and then gradually wear it in the day time until he is use to it. I told him that won't work, If he doesn't start out wearing it for the 23/7 then he won't wear it at all. So he is wearing it and I don't think that it is as bad as he was thinking that it was going to be. He is now two inches taller. He is taller than me and almost as tall as his dad. That made him happy. LOL :D . Thanks again for all of the advice. We are in the process of getting both of the boys new beds so I will be sure to get the memory foam beds. I hope that everyone is doing well. Talk to ya'll later.