13 yr old daughter, 30% curve,Scottish Rite on Wednesday [Archive]

cbt131

01-10-2005, 09:25 PM

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

LindaRacine

01-10-2005, 10:55 PM

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

Mary Lou

01-11-2005, 04:37 AM

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

cbt131

01-11-2005, 05:05 AM

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

cbt131

01-11-2005, 10:33 PM

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

cbt131

01-12-2005, 02:35 PM

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....

LindaRacine

01-12-2005, 02:54 PM

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

jc3

01-12-2005, 09:30 PM

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

cbt131

01-13-2005, 06:14 AM

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

jc3

01-13-2005, 06:36 AM

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

cbt131

01-13-2005, 04:40 PM

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

Alison

01-13-2005, 06:29 PM

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

cbt131

01-13-2005, 06:42 PM

Thanks Allison,

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

Thanks,
Cheryl

LindaRacine

01-13-2005, 07:11 PM

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

Carmell

01-13-2005, 07:50 PM

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.

cbt131

01-14-2005, 06:14 AM

Linda, Carmell, Allison and all,

I am learning at an exponential rate here folks...

First of all, I must say that all of my interactions with Sarah have been information guided and non emotional, just trying to give her the best information I can and talk to her about what might or might not be done. The same with filling in her dad, though we talk sometimes behind the closed door and admittedly, share some frustration about this new diagnosis. That said, it is minor in comparison to what some other patients have to deal with for sure.....

We talked about the brace a bit and how it would be used to keep her from progressing and also how it would not correct the rib hump or curve. She had the wind knocked out of her sails last night.

Sarah is a strong kid, does well in school, involved in theatre, speech tournaments, piano and for age 13 has a strong sense of who she is. She does not follow the norm, dressing in the latest fashion. She often will wear Beatles tshirts, The Doors, Marilyn Monroe or her fender Tshirt , jeans,with her fake pearls and converse sneakers. I bring this up only to give a picture that she is not afraid to be who she is and follow her own creative muse. But....she is just 13 and the realization that this is her new body shape, got her pretty upset.

But my husband and I spoke about how to best keep this in perspective. Sarah says she noticed her thickened waist a year ago and just thought she was "fatter" on that side. (She is a petite little thing at just 5' right now) We thought, she has gone to PE, sleep overs etc, and no one has noticed among her friends. And furthermore, what if they do notice!

So my husband and I talked and thought about how best to take the spotlight off her and help her to realize that this is not "who" she is...that, like linda said, there are worse things than being assymetrical.

And by the end of the night, Sarah and I made a committment to getting stronger and start doing pilates 3 times a week together. We are going to buy her a yoga mat today and a new pilates DVD too.

It may be time for a monthly trip to Scottish Rite hospital to volunteer, or to our local soup kitchen. Sarah has been involved with animals and dog groups, raising over $500 for a canine service dog organization this fall by designing and selling tshirts. It is probably time to make this sort of thing more a part of our daily lives.

I am still going to call the doctor at Scottish Rite Hospital in regard to why not brace now? Maybe the doctor did tell me yesterday, but I have been processing so much info, and I took the call at work so I may have not heard that part correctly...who knows!

Thanks for letting me ramble here, Sarah agreed with me this morning that she is really an assymetrical kind of kid,
Cheryl

susannajon

01-14-2005, 05:53 PM

Hey Cheryl,

My 13 year old has a 60/40 curve and it totally blind-sided me. One day she was at a sleep-over with her friends, and she leaned over to pick up her things from the floor, and I layed my hand on her back and felt the rib hump. I thought "what's wrong with her back", "where did THAT come from. I lifted up her shirt, and I could see something was really wrong. This was June, and she'd had a Physical in January, and scolio screening at school in March, and all of the sudden, it was just there.

In retrospect, I probably should have known something was up. A couple of years ago, I notice her torso seemed to lean a little to one side. I also noticed that skirts and pants would never stay straight. They always stwisted around on her. I wish now I'd listened to my "mommy vibes" and gotten it checked out. But I don't beat myself up. A teenager isn't like a baby where you have the opportunity to check every inch of them over every day.

Anyhow, we took her to a specialist right away. Her curve has progressed, and she is having surgery March 9th. It's funny you say your daughter is a little assymetrical. Mine is too, quite the character. She prides herself in being a little bit different from the rest of the crowd. She's a little pipsqueek too, 5'1".

We just keep reminding Grace that this is treatable, and not life threatening, and in the grand scheme of things not a big deal. She lost a classmate to brain cancer last year, so she keeps saying, at least it's not cancer!

You might want to introduce your daughter to spinkids (http://www.spinekids.com). It's a great forium where kids with scolioisis can talk to one another about clothes, parents, bracing, doctors, the whole nine yards. It's so cool to see the kids supporting one another and talking about their situations.

Anyhow, good luck with everything!

Susanna

AC13

01-15-2005, 06:19 PM

Hello: This sounds like my daughter also. She's 13 1/2 and was diagnosed at 11 with an 'S' curve (can't remember the initial degrees). She wore a brace for 2 years. We just bought her the next bigger size clothes and she wore it under her clothes to school and to bed. It was difficult but it did slow down the curve. The doctor had said he wouldn't recommend surgery unless the curve was 50 degrees or more. Over the summer, she started her period and the curve drastically changed. She outgrew the brace and stopped wearing it completely. When we went back in to the doctor in September, her curve was at 67 degrees. She is complaining of quite a bit of back pain now after school, from either sitting all day or walking around (?) We are now scheduled for posterior surgery on Feb. 15th.
I felt the bracing was definitely worth a try - and I guess it did slow things down. You are right - a positive attitude makes such a difference. She does get depressed and negative sometimes (and you want to too) but I've always tried to be honest and positive (at least in front of her). Her dad and I both have mild forms of scoliosis, so I guess she was destined. Keeping a sharp eye on 11-year-old brother - but I guess for some reason it's more common in girls.
Best wishes!
Melinda

susannajon

01-15-2005, 06:47 PM

Hi Melinda,

Thanks for your message. Please let me know how your daughter's surgery goes. Who is your surgeon? We are looking forward to being through all of this. Our girls should chat on Spinekids.

Susanna

lrmb

01-16-2005, 03:52 PM

Hi Cheryl - Sorry to hear about all you and your family has been going through, and so fast. I'm much older than your daughter (29) but as a teenager I was braced, and was always very aware that my body shape was different from "normal." What I wasn't ever really aware of until my 20s, though, was that few people ever noticed! even my close friends wouldn't have guessed, and people always told me how great my figure was! not knowing how much I myself hated it. If you think it would help maybe you could emphasize this to your daughter...

One other thing came to mind reading your post... although I have now lost my waist on the left side from the curve, it still seems that some outfits naturally seem to create the "look" of a waist - even choosing outfits where the top ends at the waist can accentuate / create a type of optional illusion I guess :) If she is ever interested you could always do some shopping experiments and this might help.

All the very best as you figure out the best course of action for your daughter. It is so difficult to deal with scoliosis as a teen, but for me it was important to keep in mind that many others deal with the same and worse, and live full and happy lives. Your daughter is so lucky to have you to join forces with! By the way, I think you are spot on with the exercise regime. When I exercise I feel so good about myself, and feel like I am truly living despite my scoliosis.

Take care. ~Laura

AC13

01-17-2005, 01:08 PM

Hi Susanna: Thanks for the support! Our surgeon is Stephen Renwick through Kaiser. We've only met with him once and then we'll see him one more time before surgery. I wish it could have been more - I'd feel more comfortable. But we started out at Shriner's because Kaiser wouldn't cover the brace. They were great! I am looking forward to having this over with too! Yes, our kids should chat - if I can get AC on here to do it! She's kind of in denial I think. :)
Melinda

cbt131

01-20-2005, 05:35 PM

Hi all,

I just got in touch with the Doctor at Scottish Rite and they told me that Sarah's Risser is 3 and that is why they are not bracing her immediately. Plus she has a single lumbar curve which from my reading says is the least apt to progress...

That and also she got her period this past summer in July and they feel she will not progress much at all. In fact, they even mentioned that they may not even have to brace her....I guess we will see.....

Thanks for all your input,
Cheryl

susannajon

01-20-2005, 08:07 PM

Cheryl,

I would ask them to keep a very close eye on it. My daughter got her period the summer of 2003 when her curves were about
27% and 35%. They told us her Risser was also about a 3 but warned us she had some growing to do, and that she would most likely progress whether we braced her or not.

We opted for a very promising strength training study where the preliminary results looked great. Unfortunately, when we had her re-xrayed it had not worked for her and her curve had progressed. That was February. Bad news she her larger curve had progressed to 53% and the smaller curve was now at 35%. They told us that she was now skellatally mature with a risser of 5, so they told us surgery was no longer a rush. They told us she would most likely progress 1% or 2% per year, that we should consider surgery soon because the older she gets the less flexible the curve will become.

She has gone for the last few years to a sleep away camp that ends at 12. This was her last summer (2004), so we made a decision to let her do her last summer at her camp, and we would do the surgery this summer (2005). Well we had her re-xrayed again this fall (September) and her curve had not budged. This whole time we'd been researching doctors.

We started making appointments for after Thanksgiving and during Christmas. Most everyone was using our xrays from September. Then one doctor, Boachie, wanted new bending xrays and wanted newer standing xrays (12/30/04). Unfortunately, her curve had progressed and she was now 60% and 40%.

Wow, we were blown away. This was not supposed to happen, but it did, so now we're gettting her surgery in March, and not waiting for summer. Just want to warn you that kids bodies change unexpectedly, so my advice is to keep a really close eye on her, and maybe consider taking her back to Shriners for another opinion. This probably won't happen to you, But we were taking her to Johns Hopkins, to a nationally respected doctor, and they were wrong, so please just keep an open mind and trust your instincts, and keep a really close eye on her.

Good luck with everything!

Susanna

cbt131

01-20-2005, 08:40 PM

Thanks Susanna,

Once again, so much information to process!

I wonder if what I have read is true in regard to single curves being less apt to change? (Sarah has a single lumbar, one xray said 30%, and Scottish Rite read the same xray at 35%) Also says that thoracic curves are more susceptible to progression. I wonder if a thoracic curve will also progress and then affect a lumbar curve, being part of an initial "s" curve?

We will keep an eye on it but I may just request we do an xray at a month and a half and not wait for the total 3 month period. Don't know if I can get another opinion because we see the orthopedic group at SR and see more than one Dr. at the first appt. There were probably 3 in the room.

Sigh, and I thought we could calm down a bit.....more to learn, and more to keep an eye on....after the day I had today, I could use a hug.......

Cheryl