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View Full Version : 12 year old daughter - left curve?



BecsMom
02-20-2009, 07:04 PM
I am another "new to scoliosis parent". My 12 year old daughter was just diagnosed with 33 degree scoliosis. I am very un-educated on this so bear with me. Her curve is above her bra line between her shoulder blades and curves to the left. I have been looking through this forum and from what I have gathered does that mean she has left curve thoracic scoliosis? Should I request an MRI?

Her pediatrician refered us to a local orthopedist but he said he couldn't see her because it is too severe. Again, from what I've seen on here 33 is not even that bad. So we have now been refered to Loma Linda Ortho here in California and have an appointment on Tuesday morning for more X-rays and a consult. What do I need to ask and what will likely be the treatment for her? I am assuming bracing. Is there one I should ask for? She has double coverage for her insurance so we shouldn't have a problem there.

Another question I have is about heredity. I was told years ago I have mild scoliosis (no idea the degree) and my 14 year old son has 11 degree scoliosis/ kyphosis (at least thats what it was last year). Should I have my 16 year old daughter checked too?

Thank you in advance!:)

txmarinemom
02-20-2009, 09:34 PM
I am another "new to scoliosis parent". My 12 year old daughter was just diagnosed with 33 degree scoliosis. I am very un-educated on this so bear with me. Her curve is above her bra line between her shoulder blades and curves to the left. I have been looking through this forum and from what I have gathered does that mean she has left curve thoracic scoliosis? Should I request an MRI?

Her pediatrician refered us to a local orthopedist but he said he couldn't see her because it is too severe. Again, from what I've seen on here 33 is not even that bad. ...

Another question I have is about heredity. I was told years ago I have mild scoliosis (no idea the degree) and my 14 year old son has 11 degree scoliosis/ kyphosis (at least thats what it was last year). Should I have my 16 year old daughter checked too?


I would strongly encourage you to have her MRI'd.

33 isn't that much of a concern in a skeletally mature adult, but in a 12 year old girl, you're close to losing the window of treatments outside bracing and possible fusion surgery down the road (i.e., vertebral stapling (http://www.vertebralstapling.com)). You want to keep your options open.

Left convexity thoracic curves are rare: They only account for 1-2% of all curves, and have there is a documented link to left curves and Arnold Chiari Malformation (33% of lefties according to Wheeless' Textbook of Orthopaedics), and there's a smaller link to Charcot-Marie-Tooth disease.

I'd also encourage you to find out the details of your own curve (these boards are full of people who had their curves checked "years ago", only to find out they'd moved *greatly*). It would be prudent to have your other kids checked, as well.

Best of luck to you.

Regards,
Pam

pmsmom
02-21-2009, 06:18 AM
I agree w/Pam. An MRI would be a good idea. My dd initially had one to rule out any spinal cord problems.

I also asked the current surgeon we were seeing about underlying conditions, and he was able to answer my questions.

I would also recommend trying to find a *scoliosis specialist* who deals primarily with scoliosis. My dd was originally diagnosed by spine specialists, but once we knew it was a definite diagnosis, I joined this board and learned so much--ie--find a good scoliosis specialist!

Also, get at least 3 opinions--more if you need to. Make sure you and your child are both comfortable with the surgeon.

My dd (16) has a 60 degree left thoracic curve. We will be scheduling her for surgery this summer.

You've come to the right place to ask your questions and get great support!

Marian

concerned dad
02-21-2009, 07:58 AM
more X-rays and a consult.


You are fortunate that your local orthopedic guy basically admitted scoliosis wasnt his speciality and we can presume he referred you to an expert.

If I were you, I would feel better if he was a member of the SRSThen you will know he dedicates a large portion of his practice to scoliosis. You can check by visiting SRS.ORG

I am curious why you need more xrays. We also needed more xrays when my dd was diagnosed. The first xray place took the xrays on 2 films, even though the referal sheet indicated scoliosis assessment and a SINGLE full spine film is considered necessary. Our radiologist who read the spliced together 2 film xray said my daughter had a 28 degree curve. Our first ortho basically threw the films and report away and ordered a correct full spine xray. Her curve was more accurately measured and was 10 degrees higher. (Maybe you'll be lucky and your dd will be 10 deg less). In any event, I was ticked off about the unnecessary useless first xray.

You ask about likely treatment. I think that depends on the views of the individual doctor. I was initially flabbergasted that there was no concensus. You may be asked to participate in the BrAIST study if they are participating. Or they may just want to wait and see if the curve is progressing, or they may put her in a brace. I think the "standard" for a 12 year old girl w/ a 30 degree curve is bracing, but i'm not sure. The brace they offer (and this may be a contentious statement) may have more to do with what their orthotist can fit (is familiar with) than anything else. (IE, a brace like the Spinecor may not be offered)

Lastly, it will be important to see where she stands wrt her growth spurt. This is usually assessed by Risser score (grade?) but Sanders et al have shown much more accurate coorelation with Tanner Whitehouse III Staging determined by a hand xray. If your daughter is post menarchal, and they still want to brace her, you might ask for them to assess her skeletal age using this more reliable method. If she is past her growth spurt, you might want to consider not bracing.

This is just my opinion from one parent to another. Good luck.

Oh, one more thing, my dd also has a left curve (not thoracic). Our local orthopedist did a bunch of nuerological tests (touch your nose type stuff, walk on your toes,...) and decided not to give her an MRI. I guess I would feel better if he did, but he said a left curve alone was not sufficient grounds to suggest an MRI was warranted.

BecsMom
02-21-2009, 11:26 AM
Thank you all for the replies!
She started her period last summer and she is already very tall so I think she should be close to being done, but I heard they grow for 2 more years after menstration starts. She is already as tall as me and taller then her older sister. We initially started looking into Marfan syndrom and thats how we found the scoliosis. She was refered to a cardiologist who needed a chest x-ray and thats when we noticed the obvious curve. Her pediatrician ordered a scoliosis scan and both reports, the chest and back x-ray, said 33 degrees. Why would they not brace if she is done with her growth spurt? If she is done growning should we leave it as it is?

I checked on the SRS website and the doctor she is seeing is on there. If they don't suggest the Spinecor, should I ask for it? I asked when I made the appointment why she would need more x-rays and she said they always want their own. That will be 3 in one month!

I was also wondering, why is it so uncommon for the curve to go to the left? I would think if your spine is going to curve it would go either way.

I am going to make an appointment for my 16 year old daughter and I will ask my doctor about mine.

One more question. What about school books? Should I watch the weight she is carrying? She is in a computer program at school and carries a laptop every day along with her backpack and some books/binders.

txmarinemom
02-21-2009, 01:09 PM
She started her period last summer and she is already very tall so I think she should be close to being done, but I heard they grow for 2 more years after menstration starts. <snip>

Why would they not brace if she is done with her growth spurt? If she is done growning should we leave it as it is?

The fact that she's at least 6 months post menarche - and is already quite tall - does change things quite a bit. They may not brace her. The only way they can tell how close she is to being skeletally mature is to grade her (Risser, Tanner, whatever ... but the Risser is more commonly used). Personally, if she's close to done, I think bracing would be be pointless. TLSO's (hard braces like the Boston), Spinecor, and stapling all count on growth to keep a curve stable or in the case of VBS, achieve correction. If she's not growing, they're all useless.


I checked on the SRS website and the doctor she is seeing is on there. If they don't suggest the Spinecor, should I ask for it? I asked when I made the appointment why she would need more x-rays and she said they always want their own. That will be 3 in one month!

Most SRS doctors don't prescribe Spinecor, and it also doesn't have a great track record for post-menarchal AIS. They always want their own x-rays because films can vary 5 - and up to 10 if taken/read at different places. I would, however, question why she needs 3 in a month - and probably argue it.


I was also wondering, why is it so uncommon for the curve to go to the left? I would think if your spine is going to curve it would go either way.

They don't know why left thoracic curves are so atypical. They just are. And my view on the necessity of an MRI differs from ConcernedDad's: I would insist on one. ACM (Chiari Malformation) and complications of that (occult syrinx, for example) isn't always evident from an outward neurological exam (http://www.mayoclinic.org/chiari-malformation/diagnosis.html). Treatment of scoliosis without knowing if ACM or syringomyelia is present is risky.

They were recommending MRI's as far back as 2003 (view a paper published in Spine, "Scoliotic curve patterns in patients with Chiari I malformation and/or syringomyelia." (http://www.ncbi.nlm.nih.gov/pubmed/14501926)), and current protocol still *strongly* suggest one for atypical curves. Just me, but I'd want to know for sure.


I am going to make an appointment for my 16 year old daughter and I will ask my doctor about mine.

I think that's a good idea. You're both beyond the range of non-surgical treatments, but you do need a set of baseline x-rays so you'll know for certain if either of your curves ever do progress.


One more question. What about school books? Should I watch the weight she is carrying? She is in a computer program at school and carries a laptop every day along with her backpack and some books/binders.

The weight she carries should be any more concerning than a non-scoliotic kid (in the absence of ACM, of course).

Regards,
Pam

concerned dad
02-21-2009, 05:14 PM
And my view on the necessity of an MRI differs from ConcernedDad's: I would insist on one. <snip>
Treatment of scoliosis without knowing if ACM or syringomyelia is present is risky.


I have to admit I just trusted our doctors call on this one. I will ask again on our next visit though. Maybe he decided against it because there were no other symptoms and the curve isnt thoracic.

WHy is it risky to treat w/o knowing? (not that I need to lose even more sleep about this scoliosis stuff)

Pooka1
02-21-2009, 05:50 PM
My daughter had to get an MRI prior to surgery.

Since it was the common right T curve, I assume our surgeon gets an MRI on all patients prior to surgery.

I suppose if there is something abnormal with the spinal cord, they need to know that to avoid that area during surgery.

christine2
02-21-2009, 07:26 PM
Our Ortho in Ct does MRI's on all scoliosis patients. Dr Rivard said it was not necessary with a right curve. We did it anyway and all was normal. In my opinion, why not do a non-invasive diognostic procedure to rule out any possible underlying conditions.

Carmell
02-21-2009, 09:00 PM
WHy is it risky to treat w/o knowing? (not that I need to lose even more sleep about this scoliosis stuff)

If you alter a spine and there is a spinal cord anomaly (Chiari malformation, syrinx (big one), lipoma, etc.) it could cause damage to the nerves in the spine. Nerves that are very important to the rest of the body. We all know what spinal cord injuries are like - NOT something to aspire to.

MRIs are very important in pre-adolescent children, especially those who may have other medical conditions (knowingly or unknowingly) that may influence treatment for scoliosis. And, if there IS a spinal cord anomaly, often times once that part is "fixed" the scoliosis is often stabilized or sometimes resolves.

Damage from bracing is rare. Know that. However, peace of mind is power. Once you know there are no hidden problems, you can pursue the best "treatment" options for your child.

BETall
02-23-2009, 01:22 AM
Thank you all for the replies!
She started her period last summer and she is already very tall so I think she should be close to being done, but I heard they grow for 2 more years after menstration starts. She is already as tall as me and taller then her older sister. We initially started looking into Marfan syndrom and thats how we found the scoliosis. She was refered to a cardiologist who needed a chest x-ray and thats when we noticed the obvious curve. Her pediatrician ordered a scoliosis scan and both reports, the chest and back x-ray, said 33 degrees. Why would they not brace if she is done with her growth spurt? If she is done growning should we leave it as it is?

I checked on the SRS website and the doctor she is seeing is on there. If they don't suggest the Spinecor, should I ask for it? I asked when I made the appointment why she would need more x-rays and she said they always want their own. That will be 3 in one month!

I was also wondering, why is it so uncommon for the curve to go to the left? I would think if your spine is going to curve it would go either way.

I am going to make an appointment for my 16 year old daughter and I will ask my doctor about mine.

One more question. What about school books? Should I watch the weight she is carrying? She is in a computer program at school and carries a laptop every day along with her backpack and some books/binders.

Please go to www.The LABrace.com and ask information to Gez Bowman Orthostist with the Rigo-Chaneau brace, being very effective. He is in Reseda, CA
You also can send me a PM message . I have a left thoracic scoliosis.

BecsMom
02-23-2009, 09:18 AM
Thank you all for the great information! It helps to feel so informed! We see the specialist tomorrow morning and I will post an afterwards.
:)

txmarinemom
02-24-2009, 10:23 AM
Please go to www.The LABrace.com and ask information to Gez Bowman Orthostist with the Rigo-Chaneau brace, being very effective. He is in Reseda, CA You also can send me a PM message . I have a left thoracic scoliosis.

BecsMom,

I just wanted to reiterate, NO brace - TLSO, Spinecor, OR Rigo-Cheneau - is going to have an effect at this point if she's done growing. And as far as she is post menarche - coupled with her height - suggests she could be.

Remember, braces do not correct curves in skeletally mature (or very nearly mature) people; anyone who tells you they can is either mistaken, or not being truthful.

Best regards,
Pam

BecsMom
02-24-2009, 03:57 PM
Ok we saw the ortho doctor today and things are way different than I was told originally. First off her curve is to the right not the left. Second its 40 degrees not 33 and third she has multiple curves not just one. Its strange because when we look at her back it appears to curve to the left when you follow her spine up, but its obviously to the right on this x-ray. He said looking at her and looking at the x-ray you would never know it was the same kid. Her back appears very normal. Her pelvis is normal and her shoulders sit straight. Her ribs are slightly off and her shoulder blades protrude but he said based on a physical exam, he would have missed it too.

The original x-ray didn't include her pelvis and lowest part of her back so we definately needed another one. She has a very small curve to the right at the lowest part, a 40 degree right curve between shoulder blades and a tiny curve to the left above that. He said she was a risser 2 possibly 3. He said she is right on that "what do you do" line. He said bracing a curve so high up is not very sucessful, that along with her risser scale he thinks bracing would not be beneficial. But, he said the degree of her scoliosis and the fact that she might have some growth and possibly push her into surgery range makes it iffy to do nothing. He told me to decide and if we wait only wait 4 months to re-xray.
I'm thinking about getting the brace and having her wear it when she is not at school. Would that work? Isn't wearing it a little just in case of growth be better that nothing? Is the only reason to do nothing because of the embarrasment factor at school?
He said he doesn't use the Spinecor and thinks only chiropractors use it anymore, most orthos don't think it works and wouldn't perscribe it. I guess everyone has their own oppinion. I'm just not sure what mine is yet ;-)

Pooka1
02-24-2009, 05:31 PM
Hey. Your daughter's curve sounds very much like my daughter's curve... 40* and almost no rotation. We are going in for radiographs next week to see if the curve has moved.


Is the only reason to do nothing because of the embarrassment factor at school?

A very good reason to do nothing now is that there is no good evidence braces work.

txmarinemom
02-24-2009, 06:28 PM
... A very good reason to do nothing now is that there is no good evidence braces work.

Becsmom, I agree with Sharon in general, and bracing a 44 high thoracic curve (at Risser 2 or 3) *especially* doesn't sound that beneficial. At 44, I suspect the curve is probably going to do what it's going to do - with or without bracing ...

Of course, you have to decide what's best based on the data there is - and your own feelings.

It sounds like your daughter's curve is well balanced, and it IS amazing how well one can hide. Mine was 53 at surgery, and everyone who saw my x-rays (including people who'd seen me in a swimsuit) were stunned. I had compensatory cervical and lumbar curves.

I do find it extremely contradictory the ortho told you bracing a high curve like hers and bracing at her Risser would likely be ineffective, but then said it's "risky to do nothing". There are no other treatment choices (I hope she needs neither) an ortho would prescribe under the scenario outside bracing and surgery: I'd have to push him some more on that. What exactly is he saying?

You said you're "thinking of getting the brace" ... which brace? You've mentioned Spinecor a few times: Spinecor is not well suited for her type of curve and maturity.

If he's saying the upper end of her curve is likely too high to respond to bracing, I'd think if he DID brace, she'd require a TLSO with superstructure (i.e., a Milwaukee). They're commonly recommended for curves that apex at or above T9 (to get an idea where this falls, the pre-op x-ray in my sig shows my curve ... with an apex at T9). Is he suggesting night bracing with a Milwaukee? I can't say that I've ever heard of one used like that under her circumstances.

There are bending braces specifically made for night time wear (the Providence and Charleston), that apply extra force against the curves, but again ... with a higher apex curve, her current degree and skeletal maturity, I don't know how effective they'd be.

Good luck on whatever you decide to do ...

Regards,
Pam

Andrea
02-25-2009, 08:56 AM
Hello,

you have a physiotherapist in your area she can help you with education and Schroth therapy exercises, you can find her at scoliosisPT.

Good luck, A

cyndawn
03-03-2009, 06:29 PM
Should I request an MRI?

Another question I have is about heredity. I was told years ago I have mild scoliosis (no idea the degree) and my 14 year old son has 11 degree scoliosis/ kyphosis (at least thats what it was last year). Should I have my 16 year old daughter checked too?


I would go with your doctors recommendation on the MRI. Should surgury become a reality, they will definitely need one.

My scoliosis was from a birth defect, but every year I made my son bend over and touch his toes, looked at his back and checked to see if his shoulders and hips were even. Then, starting at age 6 thru 16, I requested the GP to check him out at his yearly physicals.



Cynthia