40 degrees - bracing vs. surgery at 12

[mzl]

Our dtr. has been braced since Nov., at 40degrees. She's had a growth spurt and started the menses in these past 4 months. The last x-ray showed no change without the brace 24 hours.

She asked the dr. about surgery. We aren't comfortable putting our child into spinal fusion so quickly. She hasn't even stopped growing yet.

She wears the Boston type brace 23/7. They made thicker pads to try to change the angles. She wore them for a few hours, then adamantly changed back to the old, thinner ones. For the past 4 nights, she has "fallen out" of her brace in her sleep.

She's becoming emotional about this, and we don't know how to help her. Wearing the brace may or may not help... zero change with a brace could easily have been a severe change for the worse without the brace.

Yet, surgery is radical to us. On the other hand: an older great-aunt has a similar body-type to our daughter, yet has never had surgery OR a brace. Today she suffers from chronic, debilitating back pain and complications. She is visibly contorted from her spine... yet she just told me that she's always had scoliosis! It's frightening to think of this being our daughter's future if she doesn't have surgery.

Yet I think it would be jumping the gun to stop wearing the brace so soon. We need to give her a chance to correct the curves before surgically changing her spine, permanently!!!

Help... I am sure that many of you have been at this stage (or are right now).

[Carmell]

Welcome to the board.

First off... stop and take a few deep breaths. Scoliosis can be overwhelming, if you let it be. Scoliosis is rarely an emergency situation. You DO have time to research and gather information that will be helpful in making the right choices for your daughter. With a 40 degree curve, and already starting menses, I would run away from an ortho who is recommending surgery immediately.

The next 6-12 months will (statistically) be the most risk for her curve to progress. The orthopedic community is fairly divided on the bracing issue... some orthos don't brace at all, while other brace most adolescent idiopathic teens/pre-teens. This bracing issue is something you need to discuss with your ortho, the orthotist, and your daughter. Also (just a thought here) the "new" theory behind bracing says that the patient should wear a brace 16-18 hours a day, then be consciously aware of the position of the spine when in the brace, and consciously support the spine using the muscles of the back and abs. My daughter was 13-14 when she wore a brace. She said she noticed quite a difference when she stopped and thought about the position of her back when it was in the brace. It helps a lot if you have a PT who understands bracing and adolescent scoliosis.

My other suggestion is to get at least one other opinion about recommendations for her. Its best to see a pediatric orthopedist who specializes in treating scoliosis.

If your daughter is physically active, this will be a good thing. Exercise, especially back and abdominals, is a great way to support the spine. Being physically fit is also the best way to keep discomfort and pain away. My daughter used to dance. Now, she no longer dances, but does Pilates about 5 days a week. She has more back pain than the ortho thinks she should, but, when she keeps up with her exercises, she has less pain and has better posture.

Again, take the time to research and find the right answers for your daughter. She won't have to end up like your older relative. Medical technology is here to use. Surgery should ALWAYS been considered only after everything else is ruled out. Surgery should never be taken lightly. You have time to work on things like this. Maybe your daughter can help you, and that may help her feel better about her scoliosis. Empowerment is good.

Take care and I hope you are doing well.

[KRIS ATKINSON]

I just wrote a book to you, then had a computer problem. Maybe my book was too big. My daughter was 13 when she started wearing her brace, a year ago. She is extremely dedicated to her brace 23/7, or more if she doesn't bother taking a shower soon enough. She started with about 40 degree curve, a year or so ago, and it is not 61 degree. The brace has probably prevented it from progressing alot more. She has recently decided to brave surgery, and we hope to get it scheduled for June, after school is out. Her brace makes her have less back pain, although she has trouble sleeping. Whether the sleep problem is due to scoliosis or the brace is not certain. The brace slips down on her as she sleeps, an she used to wake up a few times at night to pull it back up, I think. Now all I hear is that she wants a memory-foam mattress. We are looking into that too. She was planning to wear a brace until end of puberty, but when we realized her brace was only minimizing the curve, but not controlling it, she decided to have surgery before the curve gets worse. Postpoing surgery will make it more likely a higher curve after surgery than have the surgery before she gets worse. As I discussed with the doctor, 50% of 61 degrees is 30, whereas, in a few years, potentially 50% of 80? degrees is 40. I am also not sure when my daughter becomes at a risk of internal organ damage. The doctor finalized my daughter's decision, I think, with his statement that her spine will be less likely to grow up compared to a higher curve as she postpones surgery, and that less than 1% chance of paralysis or any other complications like that. I hope this helps.

[susannajon]

Hi Kris,

If I am reading your post correctly, your daughter's curve has already progressed with bracing from 40 degrees at 12 to 61 degrees at 13, correct? My 13 year old was just operated on two weeks ago for a 60 degree curve. I won't lie to you. This is major surgery and you have a lot of research and preparation to do to help ensure the best possible outcome for your child.

From everything I've read, you and your daughter are making the right decision to have surgery now at 60 degrees rather than waiting for further progression. You have a good chance at a very good correction. My daughter's curve was corrected to about 18%. Do you have a surgeon in mind, or do you need some names?

My heart goes out to you as you struggle though this very difficult decision process. This has been a tough couple of years for us and I'm glad we're on the recovery side of surgery. This is a great forum where you will find lots of very supportive moms. Try jumping over to the adolescent board too, as many of us with teens end up chatting there. Please don't hesitate to ask any question at all, and we will try to point you in the right direction.

[susannajon]

mzl,

My heart goes out to you and your daughter. I guess one thing that I found that helped was to talk to my daughter about choices, and to ask her to think about her life in 20 or 30 years, and what dreams she has for herself. Help her get out of the emotional 13 year old here and now, and take an active role in deciding her future. My daughter and I had a lot of heart to heart talks. I tried to reinforce that it was her body, and ultimately her decision. To wear a brace or not. To have surgery or not. We talked openly about the consequences of the decisions, and we decided together how to deal with it. We ultimately opted for surgery when her curve reached 60 degrees. She reached that decision after talking to children and adults who had opted for surgery, as well as meeting a lady who has not had surgery.

In most cases, if your daughter can hang in there with the brace until she's closer to skelatal maturity, she won't lose much height, and if she holds the curve at 40, she may be able to avoid surgery.

Anyhow, best of luck with everything!

[mzl]

braced at 40 deg; brother just jumped to 25 deg. and now will be braced!

Susanna,

I just reponded to you but it didn't go through. Thank you for your guidance and wisdom... you and your daughter have gone down the path which we are just entering, twice, today! I plan to let my dtr. read your response. Maybe it will put her in the appropriate frame of mind.

She is still 11 yrs old for another week, and has a bit of growing to do (physically)... She's sick and tired of hearing about how we are "fighting for every degree we can get"... SHE is the one being squeezed and pushed inside a sweaty brace, and how dare I even claim to be trying so hard to find her comfort and correction of her angles? How dare I claim to be feeling horrible about any bit of pain and anguish she is going through? To her it's all posturing! (No pun intended). I don't blame her a bit for wanting to throw in the towel (and the brace). Yet.........

The other day, I had a gut feeling that her 14 yr. old brother's growth spurt may have pushed his angles up a bit faster. So instead of watching and waiting until our scheduled appt. at the end of May, I brought him back to the Ortho. the other day. It's a good thing we went... his curves have jumped from 10 & 13 up to 25 degrees. He now needs to wear a brace (just like his sister... but highter up). While my dtr. remained at the same angle in the same amount of time, my son's angles DOUBLED without a brace!!!

This still has not impelled my dtr. to keep her brace on 23 hrs. a day this week. She's rebelling loudly... and I don't blame her. Yet, I have to take a lovingly firm stand and try to cushion myself from her young teenage wrath while going back and strapping on her cast-off brace 3 or 4 times a day. She's at least sleeping in it... and wearing it all through the school day... and we're hopeful that she's going through a natural "phase"... I hope!

By next week I'll have TWO young teenagers in back braces. This is no picnic. I can only remotely imagine what you are going through with the healing process... after the bracing and after the surgery! I wish you strength and comfort. mzl

[susannajon]

Hi,

One thing I have discovered in talking things through is that my daughter has her moments where she lashes out at me, but it's not because she really believes I am trying to torture her. It's because she feels safe with me, and I provide a safe outlet for her to vent her frustrations. We always end up apologizing to each other later.

I'll bet if you wait for her to simmer down and then talk it out later, she'll be more open to discussing what she's feeling. Boy, double whammy with your son! I sure don't envy you. I feel stretched to the max dealing with one kid!

Susanna

[nikyergen]

MZL,
I now know what it is like to have two kids in braces. My, almost, 13 year old wears a brace, only 18/7 though. My 16 year old just had surgery last Tuesday and has to wear a brace for a while. She would of much rather had the chance at a brace in the beginning and possibly not had surgery. She tells her sister this all the time. I just had a discussion with my 13 year old about wearing her brace. It is a continuous battle. However, my 16 year old wears her brace religiously, as she doesn't want anything to go wrong with her back that was fixed last week. She had an 88 degree curve. She doesn't want to have to anything radical again. My 14 year old has scoliosis too, but is very mild and a wait and watch.

So, hang in there. It will be a battle, but it is for the kids own good. Whether they realize it or not.

You are in our prayers.

'til later,
Nikki

[mzl]

Nikki and Susanna:

thank you for sharing your experiences with me (and with all of the readers)... we're just waiting for the insurance approval to kick in and for the orthotist to build my son's brace (s/b within 10 days, hopefully), and for the past couple of days my daughter has simmered down about hers. As hindsight is 20/20: my daughter has come down with tonsilitis.. two days after her meltdown about the brace. Parenting experience should have told me to look at the big picture and realize that something else was going on in addition to her annoyance with the brace... but the immediate issues at hand have somehow clouded my sense of logic and reasoning (as well as hers).

We're all pulling through so far... thanks for all of this support!

[momofthree]

To MZL:

Our daughter was diagnosed at 14 with a 40 deg. curve, the first doc, said Surgery asap-we were taken aback and after scheduling the surgery, we canceled the day before after quickly seeking another opinion. We were told that at 4o deg there is a 50 percent chance of it progressing-we were willing to take a chance. they also said that once a curve has reached 40- a brace is not an option-that it would not do any good. For her next follow up appt, it had remained the same-we were ecstatic. One year later (after the original diagnosis) she was 15- no growth left based on her xrays, and her curve increased to 52 degrees. She is now scheduled for surgery in 3 weeks with a t3-t12 spinal fusion. The doc. said that if she does not have it done, within 20 years it could compromise her heart and lungs. She has already lost height (she was 5'3.5 and is now barely 5'2) and does have back pain. I am really trying to gear up for this surgery, but the truth is i am a nervous wreck. This needs to be done to avoid further progression.

good luck

[nikyergen]

Momtothree,
It is okay to be a nervous wreck. This is your child and as a parent you always worry about the worst. However, can I just give you a brief experience. Crystal has surgery on her back of 3/15/05. I was a disaster from the middle of February to the middle of March. I was worried, not sleeping, and snapping my other two kids heads off unnecessarily. After Crystal came out of surgery, I looked back at the past four weeks and wondered why I was so keyed up. Everything was fine and Crystal's surgery went letter perfect.

Do take some time for yourself. Fill the tub up with hot water, your favorite bubble bath, a good beverage, a good book, lock the door and just soak and have quiet time. It doesn't make things go away, but it will help you relax.

Love and prayers to you.

Nikki

[momofthree]

Nikki:

You are so sweet. I am so glad that I joined this forum. Thank you for the advice. I know that I need to be supportive for my child-she is stronger than I am-but it is hard. It is nice to hear from others who are experiencing or have experienced the same feelings, emotions that I am.

Best of everything for your family!!

Kim

[flowerpower]

Hi Momofthree,
Me too! My 14 year old son has 44 upper/42 lower curve and we are also facing surgery next summer at the latest. However, he is still in the midst of a major growth spurt (at least 2 1/2 inches since last September). Our doctor anticipates his growth to stop around age 16, but so far his curves seem to be progressing 1 degree per month. I'm (almost) glad we did not try bracing first-I wore a Milwaukee brace for 4 years (23/7) then at night for about a year and I was told I still needed surgery after all was said and done. I refused to have surgery and it is now that I am starting to really feel the effects. Until we make a final decision on my son ( I am trying to research alternative treatments) I am getting him started on a "yoga for scoliosis" program. Many of the excercises were ones I did for p/t when I was braced. He seems to like the excercises, we just need to get into an everyday routine. Please keep me posted on your "journey" as we all learn from each other. Best wishes to you....
Flowerpower

[susannajon]

Hi flowerpower,

Sounds like you're doing great at helping your sone be as strong and flexible as possible. Whether or not you guys decide on surgery, he will benefit tremendously from the yoga. I might suggest you give pilates a try as well. Those core muscles are so important in supporting the spine. Best of luck with everything!

[mzl]

bracing vs. surgery at 12... update

At my childrens' last visit, my daughter's 40 degree angles had gone into the 30's!!!! We're now going with a 50% chance of surgery rather than a 90%chance, and we're rooting for this brace!!! The brace-maker put thicker pads into my dtr's brace 3 months ago, and they seem to be doing the job. It's still hard, though, for my dtr wear her brace constantly... it's getting soooo hot. Also, she sees her big brother taking off his brace, and the two of them are in competition all of the time. They go off to camp in two and 1/2 weeks...the camp nurse knows about the braces for both kids... hoping and praying that they'll keep them on on on on on!!!