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Thread: 13 yr old daughter, 30% curve,Scottish Rite on Wednesday

  1. #1
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    Jan 2005
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    13 yr old daughter, 35% curve,Scottish Rite on Wednesday (% of curve updated)

    Hi all,
    This has happened so quickly. Our 13 yr old daughter went to the Doctor to get a physcal to join track and the next thing I know, we are having a scoliosis x-ray. It came back 30%, and I will be picking up the films on Wednesday before our appointment at Scottish Rite Hospital in Dallas.

    First, I feel like how could I have missed this? When I looked at her back today after the appointment, it was so obvious. From the back~Big curve, and a raised sort of muscle area below her left rib cage area. Then from the front, one side is typical looking, waist inward and hip curved proportionately out but on the other side, no indentation at the waist, straight down from her rib cage to hip.

    She has always been such a modest adolescent. always covering up until lately. But, I was stunned when I saw the change. Did this happen so quickly? She just got her period in July 2004 at 12 1/12.

    So I guess we will find out more at our appt. on Wed. AM. My daughter had a lot of questions and I told her what I could about braces, surgery or just watching the situation. She also visited iscoliosis.com and read some of the stories. I figure it is best to have her have a little idea of what she has and how they might deal with it.

    I don't know if Dr. Sucato at Scottish Rite is good but I am hoping that Scottish Rite will be the best place for us here in Dallas, TX.
    Any hand holding would help or what sort of questions I should ask at the appt. Or any way to check out if this physician is the one to go with?
    Thanks,
    Cheryl
    Last edited by cbt131; 01-13-2005 at 07:40 PM.

  2. #2
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    Hi Cheryl...

    I'm sorry to hear about your daughter. Don't blame yourself for not noticing. It's actually relatively rare when parents do notice.

    The good news is that it sounds like your daughter may be close to skeletal maturity. If that's the case, then her scoliosis may never worsen. I'm sure Dr. Sucato will mention this when you see him.

    I don't know Dr. Sucato, but it sounds like he's got some experience in scoliosis. You can read his bio here:

    http://www.tsrh.org/m_orthopedicsstaff.cfm#sucato

    Good luck on Wednesday. You've obviously already have done a lot of research. You're doing the best thing that you can for your daughter.

    Regards,
    Linda

  3. #3
    Mary Lou Guest
    Cheryl,

    Please don't blame yourself. What is done is done and right now, your daughter is probably scared and she needs you and your support. Together you will get through this.

    My daughter was diagnosed with a 36* curvature by our doctor at her 12 y.o. check-up. My husband used to tell her to put her shoulders back and she'd say she couldn't; the doctor told me the day after diagnosis that he was going to growl her for her bad posture and the said thank goodness he didn't because of her Kyphoscoliosis, she couldn't sit straight!

    As far as what to ask the doctor, there are so many things you could ask. My best advice for now is to take someone, husband, friend, who ever with you to the doctor. It helps to have that person for support, but also to have them help remember what the doctor says. Write down your questions before hand and ask the friend to write down the doctor's answers.

    If there is anything else, you need, please ask. You've come to the right place for information/support. Good luck tomorrow. I'll be thinking about you.

    Mary Lou

  4. #4
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    Thank you mary Lou,

    Thank you for the kind words they mean a lot to hear from other people in regard to this.

    I will keep reading and learning and hopefully we will have a good visit at the Dr. Our daughter has such an awesome attitude, probably because I have kept it pretty upbeat and positive too.....
    thanks again,
    Cheryl

  5. #5
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    Hi Linda,
    I was in a rush to get off to work this morning and somehow I missed your post!
    Thank you for Dr. Sucato's bio I will read it after this post...then go right to sleep, we are only a 35 minute drive from Dallas, but at the height of rush hour and with our appt. being at 8:45 AM, we are probably going to leave at 7 AM to be sure. That way we may only be 15 or 20 minutes early at the worst.

    Our daughter Sarah is 5'1/2" so she will be a small wee one probably like her 18 year old sister who is only 5'1" and quite petite.
    I am 5'4" and her dad is the tallest in his family at 5'6". We come from small stock! My mom was 4'11" and my dad was 5'11". Grandma was 4'11".

    Thanks again for the encouraging words. I am reading a lot and feel like we will be in good hands at Scottish Rite. Many people have told me what a great hospital it is.

    This website has been an incredible help to me so far, thanks to all for their posts and info.
    Best wishes,
    Cheryl


    _______________________________________________



    Hi Cheryl...

    I'm sorry to hear about your daughter. Don't blame yourself for not noticing. It's actually relatively rare when parents do notice.

    The good news is that it sounds like your daughter may be close to skeletal maturity. If that's the case, then her scoliosis may never worsen. I'm sure Dr. Sucato will mention this when you see him.

    I don't know Dr. Sucato, but it sounds like he's got some experience in scoliosis. You can read his bio here:

    http://www.tsrh.org/m_orthopedicsstaff.cfm#sucato

    Good luck on Wednesday. You've obviously already have done a lot of research. You're doing the best thing that you can for your daughter.

    Regards,
    Linda

  6. #6
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    Hi Linda, Mary Lou and all~

    We went to Scottish Rite Hospital in Dallas this morning and met with Dr. Sucato in regard to Sarah. It turns out she has a 35% curve with some rotation, lumbar (lower, but looks mid back to me, what do I know, lol) and they are having us come back in 3 mos, April 6th. We will do a new set of x-rays and discuss then.

    The doctor did say that it looked like we would be looking at bracing (he mentioned a night brace vs. all day) and that at this point it wasn't looking like surgery was necessary. He gave her a clear to continue to run track and didn't give her any physical limitations. I also asked if we could continue to take her to our physical therapist who does myofacial muscle work, when she has pain in her knees or ankles which she sometimes, pretty rarely, has. Just for making her feel better not as a substitute for anything.

    She got her period in July and really shot up over the summer so he was suggesting that it could have happened then. We are still looking at 18-24 more months of growth but he seemed to feel her spine was almost mature, I suppose that means she would get anymore height from leg growth. She is 5' right now. (Her 18 yr old sister is 5'1")

    I didn't ask a lot of questions because I wanted to see how the curve progresses till our next appt. But I do wonder how much can these curves progress in 3 months? Also, the curve of her spine has pushed tissue (?), muscle (?) to the left side of under her rib viewed from the back and she has no indication of a waistline on her left side. I also wonder if the bracing will correct that? I know I will ask these questions in April and I am not afraid to pose them, just thought they would be more valid in 3 mos. when we could compare progression of the curve and when we are facing wearing a brace.

    All in all, Scottish Rite was awesome, friendly and informative and the Dr's were wonderful.

    Thanks to all for your input and answers,
    Cheryl
    PS: I also spoke with both sides of my family as well as my husband's, no scoliosis on either side....

  7. #7
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    Hi Cheryl...

    What you describe is probably a rib hump. When the spine curves, it also rotates. And, when it rotates, so do the ribs (which are attached to the thoracic spine). Bracing will temporarily flatten the rib hump, but it will almost certainly return when bracing is discontinued.

    I'm really surprised that Dr. Sucato didn't immediately put your daughter into a brace. I'm sure he has a reason. If you find out what it is, I'd love to know. She is definitely in the range where brace treatment is effective. While not common, I've heard of many kids whose curves increased drastically in 3 mos, usually during a growth spurt.

    While scoliosis is thought to be genetic, most of us don't have a relative with scoliosis. I'm one of 8 children. As far as we know, neither of my parents, nor any of my siblings had/have scoliosis.

    Regards,
    Linda

  8. #8
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    hi cheryl,
    i don't mean to stick my two cents in, but i am also surprised that your dr. didn't suggest bracing. Most drs. suggest a brace when the curve is 24 degrees. Maybe it would be a good idea to get a second opinion. Just a thought. There is a chance that you will get lucky and the curve will not progress, but there are some instances where like my daughters when she had a growth spurt she progressed 7 degrees in approximately 3 months.
    Well, i hope all goes well. I'm sure it is stressful finding this out all of a sudden, but you've come to a great place for support here.
    good luck
    jennifer

  9. #9
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    Good morning Jennifer,

    I am so new to this and didn't have questions until 5 pm yesterday...our appt was at 8:45 AM. So I called the nurse at TSRCH and posed a few questions for the Doctor.

    1) Why wait 3 mos to brace?
    2)What are the benefits to waiting?
    3)What kind of curve progression could we see in 3 mos?
    4) Will the rib hump disappear w/bracing and what are the chances of it reappearing after bracing in other words how permanent are the results of bracing 35% curve at her stage?
    5)Will she gain a waistline again on the left side where the rib hump is?

    I looked up braces last night and read extensively about the different braces. The doctor had mentioned a night brace and that would seem to be the Charleston bending brace unless he goes with the most recent brace for night which is the Providence brace - a computer-guided mechanized brace.
    I read about the Charleston brace really being beneficial for single curve lumbar situations, which Sarah has, but some studies refute it's longterm benefits for even this.

    So much to learn and hopefully our doctor will call back today!
    Thanks again, alll, including Linda who helped me as a newbie with some questions I wouldn't have know to ask.
    Cheryl

  10. #10
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    hi cheryl
    wow, its sounds like you are learning alot already and that was a good idea to call and ask those questions. That's what happens sometimes you think of all these questions after. About the rib hump and the waistline i don't believe a brace will "correct" the curve and rib hump, it will hopefully not let the curve progress. Let us know what the dr. says when they call you back.

    jennifer

  11. #11
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    I heard from our doctor at Scottish Rite in Dallas and I got some answers to my questions. I guess I didn't realize that the brace will only keep the curve from progressing, it won't correct it, the hump at under her ribs won't go away, and she probably won't regain a waistline on that side. It was mentioned that her spine is close or probably close to maturity (I don't know what her Risser is).
    So if I understand this correctly, we keep her curve from progressing but with bracing only she will have a 35% curve and a rib hump (hers is fairly low near her waist, thus the lack of waistline indentation) at the end of this.

    Our doctor said he felt surgery was not warranted in her case based on what they saw yesterday.

    I also assume there is an entire different school of thought because I am reading about so many others who are having surgery for 30% and larger curves.

    So the bottom line is:

    Sarah could be braced, keeping her curve hopefully from progressing, and live with her 35% curve and slight rotation and small hump. She now goes every once in a while or couple of months to our physical therapist who does myofacial muscle work on her to relieve minor discomfort from the effects of this, like some knee pain, leg a bit shorter on one side, shoulder pain. So far this hasn't keep her from being active, she just joined track at school.

    Or if we went to another Dr.for a second opinion, they might suggest surgery? which would involve fusing vertebrae, rods? I don't know for sure but I suspect they would "straighten" her out.


    How do you answer the question of would she be better off non-invasively, and dealing with aging w/out hardware and fusing and maybe being a bit off kilter OR do you go ahead with the surgery and then possibly have concerns what the outcome might be? Plus is there any validity to the concern about growing older in regard to arthritis, rods, or lack of mobility with a fused lumbar region?

    Also I need to take into consideration when even beginning to think about surgery, that our daughter is allergic to almost every antibiotic (sulfa, amoxicillan, penicillan,ceftin) except Zpack.

    A lot to think about for sure,
    thanks
    Cheryl
    Last edited by cbt131; 01-13-2005 at 06:11 PM.

  12. #12
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    Perth, Western Australia, Australia
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    Hi Cheryl

    One thing that came to mind as I was reading through the post is;
    that Doc's usually go for surgery for Lumbar only curves when they are about 40 degrees ; Thorasic only and Thorasic Lumbar curves when they are in about the 45 degree to 50 degree region at least (in Australia it's pretty rare for below 50 degrees to be fused). 30 degrees would seem a little bit early to me to fuse. I have friends (my age which is 18) who have unfused curves (in a variety of places) of about 25 to 35 degrees)

    You do have lots of stuff to think about; I do wish you all the best. I remember watching my parents agonise over the to fuse/not to fuse questions when it came to that "time" for me. I'm sorry I can't be of much more help

    My very best wishes

    Alison
    Last edited by Alison; 01-13-2005 at 08:15 PM.

  13. #13
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    Thanks Allison,

    All input, help, hugs, replies are welcome! Let's hope her 35% lumbar curve doesn't progress....

    Thanks,
    Cheryl
    Last edited by cbt131; 01-13-2005 at 08:05 PM.

  14. #14
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    Hi Cheryl...

    It wasn't clear from your post whether you got an answer as to why the doctor didn't want to put your daughter into a brace immediately.

    I pretty much agree with Alison. The doctors whom I've heard from in recent years pretty much won't consider surgery until one's curves are at least 45-50 degrees.

    Bracing may keep your daughter's curve from progressing, and potentially avoid surgery. Fusing one's lumbar spine is something to avoid if at all possible. I personally feel if there's any way to avoid it, one should do so.

    If your daughter's curve does increase to the surgery range, she will get SOME correction to the rib hump and assymetry. As someone who has been assymetrical most of my life, I can tell you there are lots of worse things that one can have on their plate. :-)

    Regards,
    Linda

  15. #15
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    Hi Cheryl,

    Your daughter's spine issues sound very similar to my daughter, Kara. Kara was diagnosed on her 13th b-day with a 20 degree lumbar curve. 3 months later, the curve progressed to 26 degrees. She was put in a TLSO brace which she wore only at night (she hated it!). By age 14-1/2, her Risser score was 5, meaning she technically was skeletally mature.

    Over the next couple of years, her spine stabilized with 35 degree lumbar curve (brace was a non-issues as she stopped wearing it after 6 months). She also had an upper thoracic curve of 26 degrees, with a "significant rotation" of the spine (per the ortho). The rotation meant that she had a visible malformation of the spine. Her waist was straight on her right side, her right hip stuck out farther than the left, when she bent over in the slightest, you can see a rib hump, etc.

    She is now 18yrs old and her lumbar curve measured 30 degrees in August 2004 and her upper curve was in the teens. She actually has had some slight improvement (considering the +/- 5 degrees margin of error). Her ortho feels that since she has remained stable for 4 years and is skeletally mature, her chances of the scolioisis progressing are about the same as the general population without scoliosis. We'll see if he's right, but so far, so good.

    The key to keeping Kara's spine so it isn't uncomfortable is activity. The more physically active she is, the better her posture, and the better her back feels. When her back hurts, she has poor posture, which makes her muscles strained even more - a vicious cycle. She does Pilates most days (not a lot, but enough to stretch good - probably 15-minutes worth) and she does some lifting.

    I sincerely hope that your daughter continues to do well and that her scoliosis does not progress. I'll be interested in hearing how things look in a few months. Keep us posted.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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