Scoliosis... Do you have an experience you can share?

[Mayk]

My daughter was diagnosed 16 months ago with a curve of 17 degrees in the thoracic region. Smaller curves lower and higher. No changes for 10 months. Last week during a regular follow up visit the curve had advanced to 40 degrees. She will be fitted for a brace this week in attempt to prevent additional curving. She will wear it for 18 months.. Before they determine it's been controlled or surgery is on option. My only co-worker with an experience to share has a story that makes my head hurt. If you can share an experience I'm interested in how you handled the treatment and if the brace was successful. We have awesome doctors at a top rated chilren's clinic and a pediatric orthopedist with 25 years experience. I would just like to hear from real people about wearing the brace and the outcomes... If possible...if you don't mind sharing.

 

[Aoife]

First of all, Mayk, it sounds as though your daughter is in very good hands. I know it's a scary diagnosis, and every curve and situation is different, so your coworker's situation may not have anything to do with what your daughter will experience.

Our younger daughter was diagnosed with an s-curve when she was 11, and she is almost 26 now. Her curve started in the mid-thoracic region, and extended into her lumbar region. She began wearing a brace when the major curve was only 14 degrees, and she wore braces for about 4 years (sorry, some of the exact details are a little sketchy at this point.) She was extremely compliant with wearing the brace, only taking it off to dance (she was a competitive Irish dancer), swim, etc. Her curve progressed to around 20 degrees by the time she completed her major growth spurt, and at that point her orthopedist felt comfortable with discontinuing the brace. After the brace was discontinued, the curve "sagged" a bit more, and she lost about a half an inch of height. She does experience some discomfort periodically because of the scoliosis, but for the most part, it doesn't limit her much on a day to day basis. She races with a women's bike team, and her husband has customized some accommodations into her bikes, but she really doesn't consider her self handicapped in any way, nor would anyone looking at her notice the scoliosis.

I can also offer up the experience of one of my other daughter's friends, who was never braced and who had surgery when she was in high school. The surgery was painful, and the recovery was extended, but the outcome was excellent, and she has no regrets about the choices she made.

I hope some of that is reassuring to you and to your daughter, Mayk, and if you have any questions, I'll try to answer them, or ask my daughter if I don't recall the answers. Best wishes to you both.

 

[marymm]

(sorry could not delete)

 

[Lottie]

I apologise in advance if this is unhelpful but there is a Judy Blume book called Deenie about a girl with Scoliosis. Its teenage fiction so its more about how the girl copes with the diagnosis and the brace at school, with her friends etc. It might be a worthwhile read for your daughter.

 

[Haven]

Hi, Mayk!

I'm sorry your DD just got this diagnosis. My sister wore a large back brace for several years during high school and college. It went from under her arms to her tail bone. This was in the late 90s/early 00s, so maybe brace technology has changed since then. She had an over 40-degree curve, but I can't recall the exact number. She did not need surgery at the end of her brace treatment.

She is now 26, and does not have significant scoliosis-related problems. You can still see the unevenness in her back when she bends forward, it looks like she has a hump on one side, but it's nothing worth worrying over. She has been running and bicycling for the last several years with a lot of success.

I have scoliosis, I don't remember the degree of the curve. It is something in the mid-teens. I never wore a brace for it.

Do you have specific questions I could ask my sister for you?

 

[Tacori E-ring]

When I was in high school a doctor casually mentioned I had it. I can't remember the curve but I have never received any treatment. My dad was diagnosed late in life. He actually broke his spine and they discovered it and straightened him out during his surgery. I think he gained an inch. I hope the brace helps your daughter.

 

[Mayk]

Thank you Haven, marymm, lottie and Aoife... These messages on this thread help immensley. As you can imagine.. I go from a very calm and assured parent because I know we have awesome medical care and we are being proactive to a frightened and concerned parent wanting a vision into the future. I am trying to stay off the internet because my Inernet PhD usually only causes me more stress. I find it's more helpful to seek out real life examples and how people coped with things like wearing a brace in the 7th grade... how their outcome was and and it's great to hear about the people who managed through and are now leading active and productive lives. She is a dancer (not ballet , this is me sad.. not her) hip hop and some lyrical from year to year and she loves to ride horses which we don't own one but she does go to a horse camp each year and this year she will still be able to ride.. so that is a relief. She has been very quiet about it and she's not quiet about much but tomorrow we go for the ortho to fit her for the brace... it's only a 30 minute appointment but I think the real world will hit us both when the brace is in and she has to try it on for the first time. So thank you, your stories help and I am ordering the book for both to read. After I see the brace I will likely have more questions.. at this time I don't know what it looks like but it sounds as though it will be concentrated about the center of her back so maybe it will not have some of the harnesses I've seen around her thighs... this would be a blessing...and in every cloud there has to be one. Thank you again so much!!!

 

[Aoife]

Mayk, if she ends up in a TLSO or Boston brace, and it does extend down past her hipline, then be prepared for most of her clothing to not fit her when she is wearing the brace. Also be prepared for some discomfort until she adjusts to the pressure points that the brace will create. Finding the right camisole to wear underneath, and being rigorous about changing them was key to avoiding some very painful, seeping sores. Just a heads-up. Let me know if you need some input on those kind of practicalities, because they can make a huge difference to how compliant to wearing the brace your daughter will be.

 

[Mayk]

Hello again... Well she is in the brace.... We are on the fourth night with little sleep and she took it off last night without telling me...

I need ideas for making her comfortable... We lowered the room temp..l bought a body pillow and tonight propped her up on several pillows... Are there any secrets to sleeping. I keep telling her these are precious hours we need to find a way. Calling the doctor Monday morning but wondering if there is any practical experience... Neither of us is getting any sleep..

 

[Aoife]

Hi Mayk. I'm sorry that your daughter is having a tough time sleeping--the first few weeks in the brace can be really rough. Your idea for lowering the temperature of the room is on the right track, and so are the body pillows. My daughter liked to sleep with a fan blowing on her during warmer weather, too. She also would sometimes take a lukewarm shower or bath before bed, then change into a clean, dry camisole under the brace, which seemed to help.

How old is your daughter?

 

[Mayk]

Aofie...thanks...she is 13 and will be 14 in August.

Also learning she needs a good 30-45 minutes after meals to be free of the brace or she can't breathe. I think it's the pressure on her stomach if we put it on too soon and maybe slows digestion or put pressure on her diaphragm, since the brace is under breasts.

 

[Aoife]

Yes, I remember the discomfort after meals at first. My DD learned to eat small amounts more frequently, since taking the brace on and off for meals wasn't feasible for her.

Has your daughter only been wearing the brace for 4 days? If so, the good news is that a lot of this stuff does become second nature, but the initial adjustment is rough--on her and on you, too. The fact that she's beginning to wear the brace at the start of warmer weather is hard, too, since it magnifies the discomfort.

For sleeping, have you considered trying a memory-foam mattress topper? They can be warm, but on the other hand, they can also reduce the pressing of the brace against her body, if that's what is making it harder for her to sleep.

 

[Mayk]

Oh..good idea. I was going to try a feather topper...but I worried about the heat...and we live in Florida...so the heat is just getting ramped up! I will look at Bed Bath & Beyond tomorrow...At this point I just want her comfortable... Anything is a good idea!

 

[Aoife]

Florida...so you get the heat and the humidity. If you decide to try the memory foam topper, a small fan blowing directly on her might help. Poor baby. Poor you, too!

I mentioned it before in an earlier post, but since you are in such a muggy climate, make sure that you are really watching the pressure points on your DD's back and sides for hot spots. You want to avoid those turning into sores, which they can do in a flash, especially in the early days before the skin toughens up.

I hope you both manage to get some sleep tonight.

 

[Mayk]

Aoife... thank you for reminding me.. ... we are so busy trying to figure out how to sleep... we forget the other stuff .. I dowsed her with baby powder this morning.. and she is wearing the shirts under it that they gave her.. that wick moister away... and have no seams.. I hope this helps..

 

[Aoife]

I hope you both managed to get some sleep!

Those wicking undershirts are great, and should help a lot. Just be careful about changing them often so the skin stays as dry as possible, and don't use any fabric softener on them, which can be irritating to the skin. Also, be careful about using stuff like the baby powder. My DD had/has very sensitive skin, and anything at all between her skin and the camisole was likely to result in a rash. It's like the brace is a pressure cooker, and it exacerbated anything that was the tiniest bit irritating. It's a lot of trial and error to figure out what works, unfortunately.

Has she been to school yet since she started wearing the brace?

 

[Mayk]

We are hand washing those little shirts.. and not putting them in the dryer.... since they gave us three.. I may try and order a few more. Thanks for the tip on no softener.. I am the Downy queen. I talker her out of a regular tank top today because of the seams. She likes the colors of course. Geez.. I hope the baby powder wasn't a mistake.. I rubbed it in.. thinking it would help keep her drier... I'm off to buy the memory foam matress today, she finally did sleep but she didn't get much... and certainly not quality.

Today is her second day at school... The shirt she wore over it today (blousy) it can be seen. The first day was still cool in the morning so she wore a light weight sweat shirt most of the day in school and didn't take it off until she got on the bus... today will be the test and she's tired... I will be anxious to see her this afternoon and see how she did.

 

[Aoife]

You're definitely going to need more than 3 undershirts, especially during the summer. Even the wicking shirts can't keep up with the moisture (and salt) that accumulates in really hot weather. She's going to need at least a couple of changes a day. If she wants a colored tank, or just something that looks less clinical (which I can tell you becomes a really Big Deal as she gets older) take a look at some of the performance-type seamless tops at places like Athleta, Title Nine, REI, etc. Just make sure they are long enough to protect her from the bottom edge of the brace. http://athleta.gap.com/browse/product.do?cid=46754&vid=1&pid=122507 might be an option. I'm sure you've figured this out, but the chances of compliance to wearing the brace go way up if your DD doesn't feel like a frumpy freak when she goes to school.

Brace wearing can really affect body image for girls this age, so anything you can do to help her feel better about herself will help a lot. Even our DD's closest friends were amazed when she finally stopped wearing the brace at how slim she actually was without it, so you can imagine how that affected her self perception during middle and high school.

Keep us posted on how it's going.

 

[Aoife]

For reference, here is a photo of my DD's braces, with one of our cats for a size reference. They go in order of size from left to right.




Our DD doesn't want to get rid of them, but she also doesn't want to take them to her own house, which tells you something about the ambivalent feelings associated with them.

 

[Mayk]

For reference, here is a photo of my DD's braces, with one of our cats for a size reference. They go in order of size from left to right.




Our DD doesn't want to get rid of them, but she also doesn't want to take them to her own house, which tells you something about the ambivalent feelings associated with them.

I'm so glad you posted that picture... I want to show DD I just called the orthotics office and asked for a "helpful tip sheet". She said... "what a great idea" I also love the tank you listed. I will let her look this adternoon at those. We bought four blousy shirts this weekend so she now as about 7 of those (loose fitting from Forever 21 and Ambercrombie) ... I think I will send extra tanks to school with her so she can change if needed Fortunately she has study hall this term versus P.E. which will help some. She won't be getting heated up outside.

Did your daught to anything in school to get comfortable in the chairs? She said that was a challenge on Friday.

Love, love, love you kitty.... With folded ears....so cute....

Thank you so much...right now you're my best tip sheet. I love PS!

 

[NewEnglandLady]

I'm so sorry to hear that your DD is having a tough time with the brace. I had severe scoliosis as a child. I was diagnosed at age 6/7, wore a brace for 2 years and eventually had my spine fused (posterior and anterior) at age 9. I had an S curve ranging from T4 - L2/3. The lower curve exceeded 90 degress, so my spine was turning in on itself.

The brace took a lot of getting used to. I had the Boston brace, so yes, nothing fit. And I was only allowed to take it off for baths. We used a cotton undershirt and baby powder in the heat of the summer (we had no air conditioning and lived in the hot/humid midwest). What helped me get to sleep was taking a bath right before bed. In the summer, it was a cool bath. I think my mom even put lavender in my water to help relax me before bedtime. Eventually, I just got used to it. I think that's the toughest hurdle to tackle.

I hope the brace does help your daughter. I did end up needing the rods and recovery wasn't exactly easy, but part of the reason was that I was so young and my bone was very soft. In fact, at that time (1990) I was the youngest to have Harrington rods and my surgery was taped and used for teaching at Mass General Hospital. In any case, I did recover and went on to live a totally normal life. I've always been very active, so the rods have not hindered me. Not even when I was 9 months pregnant!

 

[Aoife]

Yes, it would be great if tip sheets were handed out, but unfortunately some of these things are so individual that there is just a lot of trial and error involved.

With your daughter's discomfort in the school desks--is there a specific area that is creating the issue? Is it pressure from her brace on some part of her body, or is it that she's having to sit up straighter than usual? The having to sit up straighter: she'll get used to that. If it's pressure from the brace, that's a whole other issue that needs addressing. Let me know, and if I don't know the answer, I'll ask my daughter.

Our male cat (the one in the photos) is quite the charmer. I tried to catch a photo of him when he was sitting inside one of the braces, but he moved

 

[Mayk]

NELady.. thank you for your post.. most inspiring are the stories of people surviving the brace and/or surgery and going on to live a full, active happy life... I keep telling DD "it's a moment in time"...

Aoife - she had a much better day at school today. Still working out a few kinks but better... got her braces tightened this morning so that will probably be the focus tomorrow at least for a day or two. I have her propped up on pillows tonight and the new beauty rest foam mattress to help with the pressure points and a pillow under her knees to keep her propped up.. which hopefully help her with the feeling of not being able to breathe.

I can't thank you enough for your thoughts and ideas... you've been a lifesaver!!! Praying we both get to sleep tonight!!!

 

[missy]

Hi MayK, I have no info to offer but wanted to say I am thinking of you and your daughter and sending lots of good wishes/PSdust her (and your) way! My heart goes out to you and I will keep you both in my thoughts and prayers.

 

[Anastasia]

Hi Mayk,

I'm glad to hear your daughter is doing better with the brace. I too had a severe scioliosis (not as bad as Newenglandlady), but pretty bad. I was diagnosed at age 10, with an s curve - one curve at 48 degrees and I forget the other. I wore a brace, but this was the mid 70's so it was a Milwaukee brace, and I don't think they were nearly as effective as the new braces. I wore the brace for 5 years, but it still progressed to one curve in the 60's and one in the 50's. At that point they decided to do a spinal fusion.

I had the surgery at age 15, and spent 10 months in a body cast. I have absolutely NO aftereffects, no back pain, and no restrictions. I have 12 vertebrae fused, and I do not have harrington rods. I have three children, and had absolutely no issues with either pregnancy or delivery. (Other than not being able to have an epidural.) I still (at the age of 4 get compliments on my posture. I am very thankful that I had the surgery .

It sounds like she is in great hands with her medical care. I know that the treatments have improved in a huge way since I was treated. I know that as a parent it is hard to watch your child go through this, but be assured that she will lead a very full and normal life!!

 

[Aoife]

I'm so glad your DD had a better day today. Who would have thought that having braces tightened could be a good thing Fingers crossed that you both get some sleep tonight. Sweet dreams to both of you.

 

[Mayk]

Missy & Anastasia...thank you...

So a full night's sleep... I'm not sure if it was because I got her comfortable or if we were both so tired. I ask her this morning and she told me she didn't know but she was freezing... whoops... 72 may be too low....

She was funny last night. We went upstairs around 8:15 for her to try out a few positions to try and get comfortable...then she didn't want to get out of bed... So she was asleep by 8:30ish... And slept until I woke her at 6:00.... Yeah!

 

[Aoife]

Amazing how much better the world looks after a good night's sleep! I'm so glad that both of you did a little catching up in that department.

Did you ask your daughter for more details about why she is finding the chairs at school to be so uncomfortable? I suggest you follow up on this, because as I mentioned before, if the brace is pressing too much on a particular part of her body, it might be possible for the brace to be adjusted. With all three of my DD's braces, the orthotists were able to make small tweaks that made a huge difference to comfort, and in at least one case, headed off a potentially very serious nerve compression problem. If you look at the photo I posted, you can see that each of the braces looks slightly different: the contours around the top of the thigh, under the breasts, at the back, etc. All those were accommodations to particular issues, so don't hesitate to ask the orthotist to help if your daughter is having problems getting comfortable. An experienced orthotist can make a huge difference in how compliant your daughter will be to wearing the brace!

 

[Mayk]

Aoife... a another decent day at school for DD. No complaints yesterday or today about comfort.. I think that may have been first day jitters... today she was really hot when she got home so I had her take off the brace so I could get a look at her skin under the brace and everything looks good.. no spots where it looks like uneven pressure. We go back for the Orthodist to check her fit Thursday afternoon and then the following Thursday we see the Orthopedic Surgeon for another set of x-rays in the brace and his review of the brace. Hoping for another night of decent sleep for her... and for me.

I'm going to try and get a picture of her in it to share.. her brace is much smaller than your DD's. Not sure if it's because of the location of the curve or that she is just smaller.. but the brace doesn't appear to go as low.. and the velcro latches are in the back.. where it looked like to me on your pictures they were in the front. (Granted it hasn't stopped her from getting out of it if she needs to.. she can reach them)...

 

[Aoife]

Sounds as though it was a good day, overall. Hopefully this will all get easier as time passes.

It's interesting that the closures for your daughter's brace are in the back. You're correct, my DD's were all front closures, and she could get those babies cinched up tight. When the velcro started to wear out right before it was time for a new brace, she'd haul out the duct tape and tape it up--you can still see the remains of the tape in the photo I posted. She said that it was actually more comfortable tight than looser: less shifting around and discomfort. I've heard friends who wear corsets as part as historical reenactments say the same thing.

I'm assuming that the different shape and size of the braces has to do with the locations of the curves. My daughter's curves started in the thoracic area, but extended down into the lumbar area. I would be very interested to see a photo of your DD's brace, because it could also be that the style of the TLSO has changed in the 10+ years since my daughter wore one.

In any case, here's to a good night's sleep, and another good day tomorrow!