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aterry
02-02-2009, 02:36 PM
I'm new here. My daughter, 16, has a 20 degree lumbar curve (I think) I'm just learning this terminology. I feel horrible and guilty, sorry this is long.

She had pain for 18 months and I thought it was because she was dancing less--she'd been doing 6 classes a week and was down to just two classes a week and her back hurt after her Modern class. I thought she just wasn't in as good shape as when she took more classes. Problem is you can't "see" the curve. She had a scoli exam at 14 that was negative; she had classes with an alignment specialist who didn't see it; the pediatrician did a spine check just one month before another dance teacher noticed the asymetry in the muscles. Pediatrician didn't even believe it until I took DD back and showed her. We've had an x-ray that shows the lumbar curve. The Orthopedic Surgeon called it "tiny". I know it's not as bad (so far) than the larger curves that many are dealing with. Surgeon said there was no reason to brace. He also said that if dance causes pain she should stop dancing (DD says, no way!). I've read on these forums that some patients use braces for smaller than 20 degrees. DD is 16, so age is against her, which is why I feel horrible because if we'd gotten an x-ray when she first felt the pain we'd be further along (at least in terms of learning to cope).

Carmell
02-02-2009, 05:23 PM
Hi aterry,

Welcome to the board. First, try not to panic (I know written words can sound more panicky than intended). Your feelings of horror and guilt are typical, but useless. Try to deal with your emotions, and move forward. Your DD needs you to be as positive and supportive as possible at this point.

My DD is now almost 23yrs old. She was diagnosed with a lumbar curve at age 13. She tried wearing a brace (was non-compliant) for 6 months. Her curve started at 23 degrees, progressed to 39 degrees by age 16yrs old. At 18yrs old her curve measured 30 degrees. We are hoping this was the "final" measurement for her, since she was well past skeletal maturity. The statistics show that a lumbar curve of less than 35 degrees at skeletal maturity has no more risk of progression than the general non-scoliosis population. So far, we're hoping my DD fits into these statistics.

Now, pain... My DD has chronic back pain. The doc assumes her pain is from the asymmetry in her body due to the rotation of her spine. Her rotation is "significant" in someone who has a moderate curve. If you know what you're looking for, you can see the asymmetry in her waist and hips and shoulderblades. My DD used to dance also. The more physically active she was/is, the less back pain she has. She likes to play the piano, and sitting at a piano is not good for her back. Lots of discomfort. She tries to adjust her activities around her back pain - sounds worse than it is. She adjusts very well and lives life to the fullest (with an office job, currently).

Orthopods will say a 20 degree curve is "tiny" because they see much worse. However, to you and her, it IS a big deal. No one wants an unnatural curve of the spine. You may want to ask for physical therapy treatments/exercises to help relieve the discomfort and help her know correct posture (which she probably already knows from dancing) and how to relieve the stress on her back on her own. PT can be very good.

I agree bracing will likely be a non-issue. She's likely fully grown so a brace would be ineffective in helping keep the curve from progressing (as in kids who are not fully grown).

Again, try to think positive. Find solutions to help her with her discomfort. Remind her this isn't the end of the world. She is not alone. You are not alone. Lots of good company here. Take care and let us know how things are going.

Mee Ling
02-02-2009, 07:32 PM
Hi, I am from Malaysia. My daughter is 10 and she has 45 degree curve. She may need a scoliosis surgery very soon. I hope someone from Malaysia can advise me of any good doctor in Malaysia for a further consultation/treatment. Thanks. Rgds, ML

pmsmom
02-02-2009, 08:27 PM
Hi, I am from Malaysia. My daughter is 10 and she has 45 degree curve. She may need a scoliosis surgery very soon. I hope someone from Malaysia can advise me of any good doctor in Malaysia for a further consultation/treatment. Thanks. Rgds, ML

Hi, ML. Welcome!

Check here: http://www.srs.org/find/index.php?mode=search

Good luck with your search!

Marian

pmsmom
02-02-2009, 08:29 PM
Welcome! You are in great company here!

I'd listen to Carmell, too--she's one of the best! There's lots of help here on the forum!

Marian

tessa
02-02-2009, 10:31 PM
First, Welcome to the board.

As for your daughter. I would look into just a brace to wear at night. But be careful with the bracing as with low degree curves sometimes you will push the spine past the point of correction, and cause it to curve the other way. That is if you even want to brace at this point. Watching and trying physical therapy should be your first step at 20 degrees.

As for that it is 20 degrees; wearing a heavy backpack on one shoulder a lot, or even a heavy purse can cause a 20 degree curve. Unless it goes over 25 to 30 degrees most doctors wont take much action as it could be caused by uneven stress on the body (growing, injury, bags), which the body usually fixes itself.

Yoga or gymnastics, or something that requires more full spine bending should help if it is just muscle unevenness. If not it will still help the bracing a bit by making her spine more flexible. And two shoulder straps on backpacks.

You mentioned dance, if it is ballet (though not always ballet), check to see if they did a sideways xray. Many dancers get back pain from flat back syndrome. It is from dancing, and it causes a lot of lower back pain. Even most doctors only look for it in professional ballerinas. If you look it up you will see that it is that from having such perfect posture while dancing forces your spine to be too straight (sideways) where from a 10 degree curve to 35 degree curve (gymnasts) is normal.

Good Luck.
Tessa

aterry
02-03-2009, 04:14 PM
Thank you for the replies. Carmel, the doctor said to watch and wait (which is why I posted on this thread). He said to come back in 6 months. Is that soon enough? I see that some people did re-checks after 4 months. Did any of you get second opinions? Show the X-rays to another doctor? etc? Carmel, you said your daughter went from 39 degree curve at 16 to 30 degree curve at 18? That was while she was wearing the night brace? Even though noncompliant? or do you attribute the change to something else? Thanks for the recommendation about P/T. Does insurance ever cover this? Does the ortho need to prescribe it, or could the pediatrician prescribe it?

Tessa, thanks for the advice about 2 shoulder straps--I've warned DD about this for years; way before this diagnosis. I've also always purchased (on-line for cheapness) copies of her text books to keep at home so she wouldn't have an extra heavy book bag. Glad I did that! When you discuss the uneveness of the muscles--I thought that was a symptom of the scoli; can it also be a cause? And what might trigger the muscles being uneven? (I know the term idiopathic means we don't know the cause--just curious). And, the doctor did do a side view and he said it was "normal". I didn't know that "normal" could cover such a range so I didn't ask for a more detailed description.

Thanks, again.

Carmell
02-03-2009, 05:37 PM
He said to come back in 6 months. Is that soon enough? I see that some people did re-checks after 4 months. Did any of you get second opinions? Show the X-rays to another doctor? etc?

Xrays done at 3-4 months are in children who have not reached skeletal maturity, specifically very small children who have rapid growth potential. 6 month checkups/xrays is typical for adolescent scoliosis review.

It never hurts to get second (or third, or more) opinions. However, many orthos will tell you what you already know. She is nearly (if not already) skeletally mature (ortho-wise), her curve measurement is under the degree of risk for progression (statistically) and it was late on-set scoliosis. Now, some think the late on-set part means you need more strict observation. No one can guarantee if the curve will progress or not. Too many variables.


Carmel, you said your daughter went from 39 degree curve at 16 to 30 degree curve at 18? That was while she was wearing the night brace? Even though noncompliant? or do you attribute the change to something else? Thanks for the recommendation about P/T. Does insurance ever cover this? Does the ortho need to prescribe it, or could the pediatrician prescribe it?

Kara's curves actually improved with normal, adolescent growth. This does happen. Most people this happens to never need to post on a support list like this, so the numbers here are kinda skewed in favor of progression rather than "spontaneous correction". Kara tried wearing a brace in the beginning, right after diagnosis. After 6 months of non-compliance, she stopped wearing it altogether (at age 14). She was not wearing a brace at all after age 14.

Our insurance does cover a certain number of PT appointments in a year. Any doc can prescribe PT, as long as they document the reasons for the RX. I also agree that if she has continued pain with a mild/moderate curve, an MRI wouldn't be a bad idea. That way you'll know if there are any "trouble spots" in her back that need to be watched more closely - areas where pinched nerves can happen, stenosis (narrowing), irregularities along the spine, etc. Something to think about if she continues chronic discomfort that is difficult to get rid of, or doesn't improve at all.

Lots to learn... I know.

Carmell

Mee Ling
02-03-2009, 07:01 PM
Hi, ML. Welcome!

Check here: http://www.srs.org/find/index.php?mode=search

Good luck with your search!

Marian

Hi Marian,
I need some reference of specialist names who I can refer to in Malaysia. I am not able to find any names using this website. Any other advice ? Thanks.
Mee Ling

pmsmom
02-04-2009, 12:57 PM
Hi Marian,
I need some reference of specialist names who I can refer to in Malaysia. I am not able to find any names using this website. Any other advice ? Thanks.
Mee Ling

I followed the link I gave you and just typed in Malaysia.

It sent me to a site of this doctor:

http://www.spine.com.my/

Hope that helps. I am not familiar with doctors or treatments in Malaysia as I am in the US, however people have recommended I check out www.srs.org, which is the Scoliosis Research Society, in looking for physicians for my own dd with scoliosis.

At least this site might be a starting point for you.

Take care,
Marian

aterry
02-04-2009, 06:14 PM
Thanks for the replies. I have a lot to learn.

aterry
03-20-2009, 01:17 PM
We have an appointment on Monday for a second opinion. We're seeing a Dr Lewis on Long Island, NY. I thought I had come across a posting some where of questions to ask the doctor but now I can't find it. I want to be prepared because the first doctor we saw only spent 10 minutes with us and said it was idiopathic and measured the curve and said come back in 6 months and that was it. I really felt that we didn't learn enough. So if there is a posting about questions to ask, could someone point me to it? Thanks.

txmarinemom
03-20-2009, 02:59 PM
As for that it is 20 degrees; wearing a heavy backpack on one shoulder a lot, or even a heavy purse can cause a 20 degree curve.

This is absolutely not correct.

Pam

aterry
03-23-2009, 01:28 PM
Today's appointment was a lot more informative than the first, so I'm glad we went for a second opinion. DD has a difference in leg length of 1/4" which accounts for 6 degrees of the curve. So this doctor is calling the scoliosis "functional", not "idiopathic" which made me think if it had been caught earlier it could have at least been lessened but they said probably not because it would have had to have been caught before her menses at 12 and at that point the discrepancy was too small to catch. And by the time it was caught her growth had slowed to the point where bracing doesn't make sense. He did recommend an insert for the shoe and physical therapy for pain. She'll go back in 6 months and if the pain has not improved from the physical therapy then they'll do an MRI. He said that scoliosis in and of itself should not cause pain. He said it's more a question of what movements does she do in dance (or other activities) that lead to muscle pain.

Karen Ocker
03-23-2009, 04:47 PM
I did not see Dr. Lewis name on the Scoliosis Research Society Physician search site.

I get very nervous when I hear: "scoliosis causes no pain" and it's caused by "one leg shorter than another". Hasn't this child's leg length been the same difference since birth? If so why scoliosis now???
If it were me, I would get another opinion from a scoliosis specialist. A child should not have to suffer that much pain without finding a good reason.

Pooka1
03-23-2009, 07:03 PM
Today's appointment was a lot more informative than the first, so I'm glad we went for a second opinion. DD has a difference in leg length of 1/4" which accounts for 6 degrees of the curve. So this doctor is calling the scoliosis "functional", not "idiopathic" which made me think if it had been caught earlier it could have at least been lessened but they said probably not because it would have had to have been caught before her menses at 12 and at that point the discrepancy was too small to catch. And by the time it was caught her growth had slowed to the point where bracing doesn't make sense. He did recommend an insert for the shoe and physical therapy for pain.

This sounds wacky.

Is this a (presently) board certified orthopedic surgeon?

concerned dad
04-20-2009, 11:47 AM
aterry
I am replying to a comment you made on another thread here. (Just to confuse things even more). You mentioned in the other thread you were considering cancelling an appointment for the SpineCor. I presume you are looking to the Spinecor to address your daughter’s pain rather than an attempt to correct or stop progression of her curve. (At 16, the former is much more likely than the latter).
I guess, I just wanted to throw my 2 cents in.
I would seriously consider putting the Spinecor on hold and getting yet a third opinion. But this time, from a doctor who is an SRS member. Your insurance may very well cover it, and he could likely make use of the existing x-rays.
It seems to me that the issue of your daughter’s pain is more relevant than her curvature (20 degrees or 26 degrees?). Maybe they are related, maybe not. The NYC Chiropractors should not make the final call on the issue. They WILL sell you a brace. It is likely the brace will indeed alleviate the pain. But what if there is an underlying cause that is masked.

Pardon me if I am speaking out of line (I probably am).

concerned dad
04-20-2009, 01:09 PM
From an interview with Dr Winter posted here (http://www.scoliosis.org/resources/medicalupdates/pain.php)on the NSF website

Q: Dr. Winter, is pain a symptom of scoliosis in the adolescent?
A: Very rarely. In fact, if a typical 12 to 14 year old adolescent with scoliosis visits our clinic and her main complaint is "I hurt," we would be concerned, because most patients of that age simply don't hurt. We would wonder (1) Why is this girl different from the usual patient? and (2) Is there something else going on besides scoliosis? Then we would order a variety of tests to find out whether she has a bone infection, a bone tumor, a spinal cord tumor, or some other type of problem.

My concern is the NYC guys would not (or can not) do the necessary tests to rule out other stuff. Once you're convinced the scoliosis is the cause of the pain, then, by all means, give the Spinecor a try.

aterry
04-20-2009, 03:28 PM
Thanks, Concerned Dad, and thanks for picking up on this from the other thread. I'm just very confused and trying to sort things out. Yes, I'm canceling the appointment with the Deutchman office because I assume there will be pressure tactics and I don't know enough, yet, to sort through them. I don't know about a 3rd opinion with an ortho. Dr Boachie is the dr in NYC most often recommended but he doesn't take insurance and I could afford one visit to his office ($400 to $800) but I certainly couldn't take my daughter on a regular basis, so I don't know if it makes sense to start. Dr Lewis (the second ortho) said if the pain continued after 6 weeks of physical therapy that I should call back and perhaps an MRI would be needed. Here's a stupid (or at least uninformed) what does one learn about scoliosis from an MRI that one does not learn from an X-ray? The issues Dr Winter brought up, such as tumors? It wouldn't, I'm guessing, tell us much about the muscles? The spasm-ing? (which I don't understand why it's being called a spasm--isn't that a sudden, usually temporary, muscle contraction?).

concerned dad
04-20-2009, 05:07 PM
I almost didnt post Dr Winters comments because I didnt want to wig you out about tumors and all that.

Did you look at the list of SRS doctors here (http://www.srs.org/find/). Maybe you can find one who takes your insurance.

Others here can better address you question about the MRI.

aterry
04-20-2009, 06:33 PM
You didn't wig me out. Tumors (and other scary things) had already occurred to me. Although my hunch is that the paint is related to the muscles.

Regarding a third opinion, I guess that scares me a little. At least in terms of going to someone on the SRS list w/o a personal recommendation from someone who has tried the practice. Maybe I should spend more time searching this site for doctor recommendations. Dr Lewis (although he does not belong to SRS) came highly recommended. He's a pediatric orthopaedist and his reputation is that he's the dr that other dr's on LI send their children to. (at least in the Floral Park/Garden City area). I don't think anyone at Winthrop Orthopaedic belongs to SRS. I don't know why.

Also, thanks for making the point that pain is why we were going to see Deutchman (or some other chiropractor). Pain is the main focus, at least at the moment.

Snoopy
04-20-2009, 07:06 PM
Regarding a third opinion, I guess that scares me a little. At least in terms of going to someone on the SRS list w/o a personal recommendation from someone who has tried the practice.

Trying to decide on where to take your child for a "second" opinion is always tough. I agree that a personal recommendation is usually a good place to start. I took my daughter to five different doctors and only one was recommended by a friend of a friend; all the others were pediatric Scoli doctors in my area. (I wasn't lucky enought to find this site until well into Jamie's Scoli care)

I see that you are taking your daughter to doctors in the NY area. Have you considered taking to her to the Shriner's Hospital in Philly? Maria from this site, travels from NY to Philly with her son. I took my daughter there for a fourth opinion. All the care at Shriner's is free, regardless of your insurance status. I personally can recommend Dr. Betz and MariaF knows tons about most of the doctors at Shriner's.

Good luck with your decision.

Mary Lou

Pooka1
04-20-2009, 09:00 PM
Regarding a third opinion, I guess that scares me a little. At least in terms of going to someone on the SRS list w/o a personal recommendation from someone who has tried the practice. Maybe I should spend more time searching this site for doctor recommendations. Dr Lewis (although he does not belong to SRS) came highly recommended. He's a pediatric orthopaedist and his reputation is that he's the dr that other dr's on LI send their children to. (at least in the Floral Park/Garden City area). I don't think anyone at Winthrop Orthopaedic belongs to SRS. I don't know why.

Our SRS surgeon handed us off to a non-SRS surgeon for my daughter's surgery. This non-SRS surgeon is treating the first surgeon's daughter. He also appeared on a list of surgeons that other surgeons would go to for themselves.

If I was starting from scratch, I would pick an SRS surgeon. But when an SRS surgeon refers you to a non-SRS surgeon and uses a non-SRS for their own kid, there must be some good reason. In our case, that reason was because the guy is an artist. He cured my one kid and will do the surgery on the other if she needs it.

Good luck.