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mrf
10-20-2006, 10:16 AM
My 12 year old daughter was recently diagnozed with a 24-25% curve on top and 9% curve on bottom. She was fitted with a TSLO brace and just started wearring it yesterday (2 hours fisrt day, 4 hours second etc up to 22 hours). Did not go well. She is so unhappy. Scoliosis on top of everything else she is going through as a pre-teen girl. She is not popular in school and is somewhat overweight. While she is an incredibly smart girl, her self esteem is low as it is - I'm not sure how she is going to handle this. She doesn't want to wear it to school but I think we will be able to get beyond that - although I may very well be wrong. She says she doesn't want to go to camp and doesn't want anyone to know (i.e. granparents aunts, uncles). She doesn't even want her sisters to know because they may say something to family or at school. (she wants her own room so that no-one will see her in it.) The orthopedist seemed to give us choices as to length of hours a day to wear it but really wants her to wear it 20-22 hours. He also told us that due to her being overweight, the brace may not be effective - which my daughter is now using as an argument against wearing the brace - not in an effort to lose weight - (another issue).

When my wife suggested to her that we should speak to someone who could help her (a therapist or support group) she freaked out.

Clothing of course is an issue that we are beginning to address now that we have the brace. She and my wife are going shopping this weekend.

So many questions. My wife feels that maybe we can have her wear it at night only but the doctor wasn'y too thrilled with that, although he said it's better than nothing. The orthotist says she can't put it on herself and make the correction tight enough so - anyone have experience with this issue?

The diagnosis and treatment all seem so "iffy." Maybe this will help, maybe not. The doctor we are using is the head of the pediatric orthopedics at Columbia in New York and he is fine but I guess we are looking for more than the diagnosis.

My wife and I are trying to be positive and keep our uncertainty to ourselves but the "It's just like braces on your teeth" argument is not cutting it.

Do we discuss this with her school (teachers, principal etc)? Are there special chairs she should sit in? Can anyone direct me to any support groups in the New Jersey/New York areas?

Thanks.

LATigner
10-20-2006, 10:39 AM
We were in your situation about 4 years ago - our daughter was diagnosed with a 39 lumber, 26 thoracic curve. She wore a hard brace for about 2 years. In the beginning we got good correction (down to 24 lumbar, 14 thoracic) and then it started creeping back up. What we didn't know was that she wore the brace pretty faithfully the first 4-6 months and then started ditching it in a closet at school. We did not have the weight issues. She is now 16 and her curves are 44 and 44, balanced and she has no pain.

When she was 15, we got her into a Spinecor brace which is night and day better for comfort and visibility. There is an entire thread on Spinecor in the bracing section which would be great for you to read. Our daughter was only willing to wear Spinecor at home and at night and now only at night so it did not do all it could have for her but her doctor thinks that the Spinecor is stabilizing her curve. She actually got 10 degrees correction when she was wearing it more hours which is great considering her age. Her doctor has adults wearing Spinecor that are getting correction.

There are so many on this forum that have been where you are and it's difficult. Bracing only works if the kid will actually wear it and thats a huge challenge for a lot of them. If I were you I would check out Spinecor and if you would like to talk more, I'm sure there are lots of Spinecor parents that will reply.

gerbo
10-20-2006, 11:08 AM
it really sounds that a TSLO is going to be an absolute disaster, and either she is going to wear it and her life will be a misery, or she is going to take it off when you're not watching, and it won't work (common consent it that they need wearing consistently for 20-22 hoyrs/ day to have a chance of being succesful) Do you know whether it is giving any correction currently? (again, the more initial correction, the more chance of being succesful)

If I were in your situation (and i was, having had my then 10 year old in a tlso for 12 months) I would seriously consider looking at the spinecor (as we did). All you need the know is in the immensly long spinecor thread on this forum, including all the arguments against (relatively new, limited evidence base (but what there is looks good)) and in favour (it has done a great job for quite a few amongst us with daughters with smaller curves (like your daughter), and it is so, so, so wearable and bearable)

feel free to ask more

gerbo

MATJESNIC
10-20-2006, 11:12 AM
mrf,

I feel for you and everything you are going through. I have a 16-year old daughter and my 12-year old daughter has scoliosis. Teen and pre-teen girls are not easy.

You are so fortunate that her curves are still low. We didn't start with the Spinecor until my daughter had a 37-40 degree curve.

I can't tell you what to do. But I know that we went against our orthopedics recommendation for a hard brace. We could not put her in that. She is a dancer and wears her Spinecor when dancing. We have never had a problem with compliance. She wears it 22 hours a day and thanks me every day for not getting her a hard brace.

I have known a few kids who are overweight who have a hard time with the hard brace.

Would you consider calling the orthopedics in Montreal and finding out about Spinecor.

It was the answer for us.

Any questions, my husband and/or I would be happy to talk to you on the phone or e-mail. We live in Bucks county, Pa.

Melissa

mrf
10-20-2006, 11:36 AM
First of all, thanks. Even with just a few responses I feel like part of the weight has been lifted. The Spinecor sounds and, from my brief look at their website, looks like an interesting option. Since she just put on the brace yesterday for the first time, we really have no indication if there is any correction yet. Our next appointment with the orthopedist is in two weeks. Part of me feels like I have not done enough research into the matter before jumping in to the bracing situation. I see people are undergoing alternative treatments as well (chiropractic and electro"shock"). After first being diagnosed I did ask the doctor about additional treatments and he was not enthusiastic - I specifically asked about the electric shock treatment (I'm not sure of the exact name) which someone had told me about and he said it was a waste. I will definitely look into the chiropractic treatments as well (in addition to whatever bracing we do). My thinking is that the orthopedist may also downplay the Spinecor brace even though is seems like such an amazing choice - compared to the hard brace. Although I have a call into him already to ask him about it.

LATigner: Why did you switch? Was it because you weren't getting good results any more from teh hard brace?

There are Spinecor centers in my area. Should I go there and check it out no matter what my orthopedist says? If I can "save" my daughter from having to wear the hard brace to school even 1 day I would do it. The question is, how long do I wait to get any brace on her? Should we do the hard brace for 15 hours instead (only at night) until we figure it all out?

mariaf
10-20-2006, 11:49 AM
mrf,

I too have a 15 y.o. daughter - she did not even want to wear braces on her teeth! So I can imagine how hard it is to try to get a pre-teen or teenage girl to comply with a traditional back brace!

The SpineCor sounds like it might be a very good option in your daughter's case because she may comply more. I don't know that much about it, but many folks here seem very happy with it.

Another alternative that you might want to keep in mind - either for now or later on - is the vertebral stapling procedure (you can search this forum or google it). The specialists to see about this option would be Dr. Betz or Dr. D'Andrea at Shriners Hospital for Children in Philadelphia (look them up as well if you like - they have excellent reputations in the orthopedic community and so does Shriners). I would be happy to answer any questions on this subject since my son had the stapling in March, 2004. My e-mail address is mariaf305@yahoo.com.

Good luck to you and your daughter. We have all pretty much been there and remember that we are all in this together :)

take care,

gerbo
10-20-2006, 12:26 PM
There are Spinecor centers in my area. Should I go there and check it out no matter what my orthopedist says?

the thing is, there are no rules, whatever you decide is best for your daughter, is what goes (although i appreciate there can always be financial restrictions)

just out of interest

1) are you seeing a spinal specialist
2) what level are the curves (like T12, 0r 11, or 10....)
3) was the diagnosis based on one set of x rays, or did you have x rays 3 months ago as well (often decision to treat is based on progression over 3 months)
4) has she had her first period yet?
5) Has anything been said about the maturity of her skeleton? (if still immature, lots of growth left, higher risk, if mature> little growth left, >. smaller risk.

What to do next is really "whatever you want"
1) accept difficulties of tlso, and accept limitations in potential succes, and try to get the best out of it (but remember, 20 hours is likely to be the minimum)

2) sort a spinecor appointment as soon as possible (I leave it to USA based parents to advice where to go). If you decide to do this, it is hardly worth wearing the hardbrace and could even be counterproductive

a proper spinecor assesment would include an xray whilst wearing the brace, so early on you would have some impression whether it is going to do anything

mrf
10-20-2006, 12:49 PM
1) are you seeing a spinal specialist -
YES
2) what level are the curves (like T12, 0r 11, or 10....)
NOT SURE BUT WILL FIND OUT WHEN DR RETURNS MY CALL
3) was the diagnosis based on one set of x rays, or did you have x rays 3 months ago as well (often decision to treat is based on progression over 3 months)
1 X-RAY in late August (not a set - just one x-ray)
4) has she had her first period yet?
YES - started around May but not regular)
5) Has anything been said about the maturity of her skeleton? (if still immature, lots of growth left, higher risk, if mature> little growth left, >. smaller risk.
NOT FULLY MATURE - STILL GROWTH LEFT BUT NOT SURE HOW MUCH.

I have already called in to Dr. Deutchman to discuss Spinecor options. Thanks. Will keep you posted. I am reviewing the Spinecor thread as well.

gerbo
10-20-2006, 01:03 PM
started around May but not regular
that's good, fastest growth might already be behind you


I am reviewing the Spinecor thread as well.
good luck, that's going to be a long night for you...... ;) ;)

Snoopy
10-20-2006, 02:25 PM
mrf,

I feel your pain! I have two daughters-one is 13 and the other is 15. My 15 y.o. daughter was diagnosed with Scoliosis 4 days after she turned 12. She was prescribed a Milwaukee brace and just couldn't wear it. She had just started 7th grade and as you know, fitting in is everything in Middle School. Her doctors switched her to a Boston brace which isn't as visible as the Milwaukee brace and she still could not/would not wear it. We tried everything to get her to wear it-bribes, threats of taking away priviledges, etc.-and nothing worked. She simply could not wear a brace. Her curves continued to progress and she had surgery just over a year after her diagnosis.

There is so many questions about what is the "right" thing to do. Force her to wear a hard brace, put her in a Spinecor, do nothing, etc. etc. Trust your instincts. Find a doctor who you and your daughter trust even if it means you take her to two or even three different doctors.

May I suggest Spinekids website for your daughter? It is a site similar to this one, but it is centered more around the kdis rather than the parents. You'll find kids there who will are willing to support your daughter and share their experiences with her.

Any specific questions for me feel free to e-mail me at Spinesupport05@aol.com. My daughter and I run a support group, but we are in PA so maybe a little far for you to travel.


Mary Lou

LATigner
10-20-2006, 03:25 PM
MRF - I sent you a private message in reply to your questions about switching braces.

mrf
10-20-2006, 03:32 PM
Snoopy,

Thanks. I was looking at Spinekids and will connect my daughter with it, although anything we do or say with regard her condition has to be handled with kids gloves. She's completely uninterested.

BTW, the orthopedist called me back. He said that while she is menarchal, her bone age (riser) is "0". He also said that because of her weight issues, she is not a good candidate for the Spinecor. I'm still going to pursue that avenue and make an appointment with Dr. Deutchman. Oh well. He did say to try as much as we could to get her to wear the brace as much as possible - although he was completely sympathetic. Will continue to let you know.

Is surgery a "cure?" Does it simply stop the curviture? Do patients have future problems because of the surgery? I know these are questions for the doctor but would be interested to hear from others.

gerbo
10-20-2006, 03:47 PM
I do wonder whether for the price of seeing dr deutchman you could fly to canada and see dr rivard?

re surgery

clearly that isn't a consideration at all for you at the moment and most likely you'll never get there.

saying that, I know of people with a larger than 50 degree curve who ended up with a less than 10 degree curve following surgery, which you could consider a cure

I think that with current techniques surgery is very succesful and one doesn't expect to many problems in later life,

gerbo

mrf
10-20-2006, 04:55 PM
Gerbo,

Dr. Rivard?

MATJESNIC
10-20-2006, 07:55 PM
mrf,

I had never heard that Spinecor doesn't work on overweight kids. In fact, I know of one boy who is stocky and his hard brace didn't work for him. He is doing very well in Spinecor.

Let the Spinecor Doctors advise you in that area. Any orthopedic who doesn't know about Spinecor and doesn't recommend it, is not going to have the correct info regarding Spinecor and an overweight child.

Believe me, you are not going to find many orthopedics in the Phila or N.Y. area telling you to get a Spinecor.

Our orthopedics at Shriner's certainly are not supporting our decision.


Melissa

Snoopy
10-20-2006, 07:57 PM
mrf,

I agree with gerbo, surgery isn't an option for your daughter at this point. For one, most surgeons don't do surgery until a child is done growing which is usually a Risser 5 and most surgeons don't consider doing surgery until the cuves reach 45-50 degrees or higher. Having said that, I'll answer your questions as best as I can. For my daughter her pre-surgery Scoliosis curve was about 46* and after surgery it is about 14*. The curve they did surgery for is holding at 14*, however, she has developed a curve above her fusion and we are probably facing more surgery. I'm not telling you this to scare you, but I believe in telling the truth. From what I've learned on this forum and other sources, my daughter is the exception to the rule. Most kids have surgery and get on with their lives. By the way, Jamie will be 2 years post-op come December.

I know you have to watch what you say to your daughter about her Scoliosis. Who knows, maybe if you leave the Spinekids website info. for her to see, she might surprise you and check it out. I'm sure it would help her to know that she isn't the only one going through this.

Mary Lou

gerbo
10-21-2006, 03:42 AM
Gerbo,

Dr. Rivard?

sorry, he is the canadian spinal surgeon who invented the spinecor, he would give you the best possible opinion with regards to the spinecor I would think. I know others have taken that route and might be in a better position to comment.

gerbo

mrf
10-22-2006, 07:29 AM
Well, we are making progress. Since the disasterous first day, we have actually progressed to 6 hours a day. While she' still not happy, she is at least coming to terms and is beginning to talk about her condition and the treatment. My wife was actually able to have a conversation with her about scoliosis - which she refused to do up until now. I mentioned Spinekids to her and, even though we are pretty conservative with internet usage, I will give her an opportunity to explore on her own.

Gerbo, Thanks for the info on Dr. Rivard. I have seen several postings on the Spinecor thread mentioning Dr Deutchman in New York with very positive comments. I think Ill speak with him first and, hopefully, get an appointment with him soon.

MATJESNIC - According to some of the information I have read, the overweight issue does seem to have some bearing on the effectiveness of the Spinecor brace but I will definitely pursue it.

Quite frankly I'm just breathing a (small) sigh of relief that she's actually agreeing to wear the brace at home. Baby steps.......

MATJESNIC
10-22-2006, 10:11 AM
mrf,

I'm glad things are a little better at your house. It will take some time for everyone to get adjusted to all the changes. It turned our lives upside down for a while. Please know that if your daughter ever wants to e-mail or talk to my daughter, she would be happy to do so. My daughter is also 12 and has had over a year to get used to the diagnosis of scoliosis.

Good luck to all of you no matter what path you choose.

Melissa

orangie0313
10-22-2006, 11:26 AM
Hey i am 14 and i wear a brace only at night.If yor dauther is haveing so much truoble wearing the brace mabe u should ask her if she would rather have surgrey.I know most kids dont but you can try.And your the parents you tell her she needs to wear the brace.If i had to wear an all day brace and go to school i seriously would not care!more attention!hahahah.It did take me a while to staring wearing my brace 8-10 hours a day but now its so easy!So just bribe her with somthing like,if you wear your brace to school for 1 week ill give u money or somthing liek that.Hey it worked for me!Ok well hope this helps!!! good luck :cool:

mrf
10-22-2006, 04:50 PM
Hi Orangie0313. Thanks for writing. I like your advice and am willing to try anything!!! Good luck to you too!