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pat
04-23-2005, 11:06 AM
Hello everyone! The more I learn and the more I read everyone's posts, it seems like why even bother bracing? No? Yes? Would someone please tell me their experence w/bracing that did not lead to surgery? Or even post back the benefits of bracing (but still led to surgery?) Thank you!!!
Pat

jc3
04-23-2005, 02:16 PM
hi pat
i as a teen wore a back brace, had a 27 degree curve and that is what my curve is now as an adult. My daughter was 12 with a 24 degree curve and was told to wear a back brace 23 hours a day. She refused to wear it and only slept in it. At age 15 now, this past November she had to have surgery for a 62 degree curve and she said it was the best thing she did rather then wear the brace for years and years for 23 hours a day. I guess wearing it to sleep just wasn't enough hours to hold the curve, but who knows if it would have worked on her anyway. It seems like there are so many kids that have had braces, and do anyway end up having surgery, but i know there are kids out there who have worn their braces and never ended up needing surgery.
Jennifer

lrmb
04-23-2005, 02:57 PM
Hi Pat!

I was prescribed a milwaukee brace from about age 12 until I stopped growing. My curve was originally measured at around 34, and over the first couple of years when I wore the brace more or less 23 hours a day the curve not only held but was corrected to around 28. As I grew to be an older teen for various reasons I stopped wearing my brace in the daytimes and because the docs knew I had done this they also provided me with an underarm brace I was more likely to wear (I wore it sometimes in the day and usually at night). Since my curve is high up, however, it was no wonder that by the time I stopped growing my curve had increased to around 40.

Now at age 29 I am facing a progressing curve and likely surgery in adulthood. I am quite convinced that had I worn my brace as prescribed my curve would have held well below 40. I personally found the brace so difficult that I don't blame myself as such for not wearing it, but I do believe if worn properly that in my case it would have prevented me from needing surgery.

Take care ~Laura

Mary Lou
04-23-2005, 06:53 PM
I don't think everyone ends up with surgery. What I do believe is that the younger the child is when they start wearing their brace, the more likely they are to wear it 23/7. My daughter was diagnosed at the age of 12 and was prescribed a milwaukee brace. She wouldn't wear it enough to make a difference. We switched to a boston brace since it is less visible and would be better than no brace at all. She wouldn't wear it enough either to make a difference and had surgery almost five months ago. However, a young lady who is the same age as Jamie started wearing her brace at the age of 2 and her mom has never had an issue with her wearing it. Another young lady we know is 12 and only wears her brace at night although she is supposed to wear it 23/7. Some kids who are pre-teens/teens when diagnosed do very well with wearing their brace as prescribed which is awesome.

Would Jamie have needed surgery even if she would have worn her brace 23/7? I don't know. I personally think that since Jamie's curves were so high at the time of her diagnosis, that they would have still continued even with the bracing. I say that because she was almost skeletally mature and her curves were continuing to progress instead of slowing down.

Mary Lou

LindaRacine
04-23-2005, 07:04 PM
Hi Pat...

I think we have a tendency to hear about the patients for whom bracing isn't effective. But, bracing is actually very effective in most. I have links to abstracts of outcome studies on my website:

http://www.scoliosislinks.com/Outcomes.htm

Also, the SRS website (http://www.srs.org) is down at this moment, but when they're back up, you might want to download the bracing manual (available on the "Professionals link).

Regards,
Linda

Alison
04-23-2005, 11:02 PM
Hi Pat

I know it must seem that "in everyone's posts, everyone's needing surgery", but don't forget on here represents only a small cross section of society.

I can't quite explain all the reasons towards why there's more surgery people then bracing people on forums such as these. I think once you get a brace for the first time, you need support initially but once you get used to wearing the brace and stuff, you gradually need less support and tend to drift away and "get on with" your life.

When you're facing surgery there's lots of ifs, buts, whys, hows and what's. The surgery is a scary thing to face, and understandably you need/look for a lot more support, guidance, answers to questions.

I am very, very pro bracing. As Linda mentioned it is very effective in a lot of cases, and its an avenue that should definatly be "given a go".

My time with my brace, wasn't, and was never going to be the "normal' experience, being diagnosed when I was so little. I wore the brace for approximately 9 years total, 23/24 hours a day.

Yes, I still had to have surgery (but that was expected), but if we had not braced at all, I would have ended up (at the rate it generally progresseed) with a very, very large curve (instead of a holding fusion in the high fifties, low sixties, it probably would have been pushing the 90's if not a lot higher), that would be inflexible (going on the way the curve I have ended up...very stiff and inflexible) and would have created many, many health problems (being double thoracic especially) for me both now and later on.

Alison

pat
04-24-2005, 05:23 PM
Thank you everyone for your replies! Such a hard decision for us.
Alison, thank you for reminding me that I'm more likely to hear about scoliosis progressing to surgery. Linda, thanks for the links; I'm anxious to check them out! Mary Lou, tough decision, you know! Thanks Laura for sharing your brace history. Jennifer, I didn't realize you were braced as a kid (and no surgery, that's what I want to hear!)

I had my daughter read some of the great stories on spinekids, about kids wearing their brace 23/7; because she's digging her heels in about not wearing it during the day, so I'm not sure if the battle's worth it. Her sister only had the night brace, and ended up needing surgery anyway.
Thanks so much. We'll see how her curves progress, her next appointment isn't for a couple of months. UGHH!!! *see mom pulling her hair out*
Pat

KRIS ATKINSON
04-24-2005, 11:24 PM
My daughter has worn her brace for over a year and loves to wear it. It makes her feel more comfortable. Her back hurts when she has had it off for about 45 minutes. I also did not search for answers heavily a year ago when she started wearing a brace, but got more anxious when we realized we needed to do the surgery this year, instead of waiting til her spine stops growing. Her spine went from 45 degrees a year or so ago to 68 recently, with 23/7 bracing. We assume it would be close to 100 without bracing. In our case, the bracing gave us all, especially my daughter, time to accept scoliosis and prevent extreme curvature simultaneously. She was having back pain when we went to the doctor to get the diagnosis confirmed a year ago, and when she got her brace, she started noticing the back pain decreasing as the brace apparently helped to hold her spine off of some areas that aggravated her. We never had to encourage her to wear her brace, since it made her more comfortable. That is one advantage we have found, even though we are needing surgery now, is that she was avoiding the back pain while we researched and her spine continued to grow some upward as long as we could. Now the upward benefit is no longer reasonable, and she will go more sideways in the curve than upward, but at least her curve has been controlled by the brace for a year, somewhat. Kris

nikyergen
04-27-2005, 03:28 PM
Pat,
I have a daughter that wasn't braced, because diagnosis was to late for a brace. She suffered many years of back pain. She had surgery on 3/15/05. She is doing very good and very happy. However, she hounds her little sister that is supposed to wear a brace 20/7. She tells her that she doesn't want to live through the pain that she has had and then to end up with surgery. It is hard to get these kids to wear their braces. They are hot, uncomfortable, and some are unsightly. But, it is for their best interest. I have threatened to get the duct tape out and duct tape the sorry thing onto my youngest daughter. She is getting better about it since my oldest had surgery, but still not in it the length of time she should be. We are getting there.

Bracing, I see is very important. It may of prevented my oldest from surgery if she would of had a brace. It will hopefully keep the youngest from surgery, if I can keep it on her.

'til later,
Nikki

mocity
10-11-2005, 06:46 PM
I am 34 and wore the Milwaukee brace from 4th grade through 8th grade. I wore it exactly as prescribed.......23 hours a day. My mom was a stickler. 1/2 for swimming during those years and 1/2 hr for showering - that was it. Then, once I got it off my curves got worse and I had the surgery in 1989 at 17. IN MY EXPERIENCE (so I don't get ugly replies.. my opinion) I hated the brace.... I had alot of physical pain during those years, emotional pain and then it didn't work. That was my experiece but apparently it does help prevent the surgery in others.

PenguinJanitor
10-20-2005, 10:52 PM
Hey, I had to wear a boston brace for three years, my curves were 23-25. Guess what? They are now down to 11 and a curve so small it isn't even noticable. I don't know why it worked so well for me. But it did. :D I wore it for 23 hrs a day by the way.

marmyte
10-21-2005, 03:50 AM
congrats angelica - that's great news

my story's in my signature and i'm in no doubt at all that my curves would have been a LOT bigger by the time i got to 18 had i not had a brace. i'm having to be quick here today so i haven't read everyone's posts word for word but a huge benefit of bracing if it leads to surgery is that it hopefully holds the curve, enables the patient to reach skeletal maturity and the smaller the curve (within the surgery threshold of course) the easier it is to operate on and hopefully the better the degree of correction achieved. i'm going for xrays on monday and from looking at the xrays taken in hospital, i doubt my surgeon will bother to measure my curves as they are now (that's how good the correction was and the really good part - i was only in surgery for 2 hours)

Attie
10-21-2005, 09:08 AM
Pat, you ask a good question especially since it seems like so many kids up needing surgery. But, I don't think we hear about the successes enough. My daughter started wearing her brace at age 12 (24 degrees double curve) and is now 14 with her curves at 29/24. Until this past summer the curves had stayed at 18/20. Unfortunately she had a growth spurt between checkups and basically grew out of her brace and needed a new one made.

Do I feel that bracing has been an effective treatment? ABSOLUTELY! It has been difficult, but when she started with it all we told her that she needed to know that she had done everything she could (i.e. wearing the brace as prescribed)...IF she ends up needing surgery it won't be because she didn't wear the brace. For her it has and continues to be emotionally difficult and she does not ususally wear the brace in public. I have tried and tried (and prayed and prayed) to help her overcome this but have not been able to. But, at least she wears it and it has been effective.

We all have choices to make in life and we live with the consequences. For her she has chosen to wear the brace...thankfully she only needs to wear it 18/day and so she has been able to "manage" her life in and out of the brace.

We take it one checkup at a time...in 2 years she's only had 1 that was a bit disappointing but hopefully things were caught in time. I pray that her next checkup in Feb. will be a good one with no progression and maybe even a slight improvement in her curves. Right now she's getting alot of time in her brace as she broke her leg in late September and has been home recuperating. -attie