Suggestion for 13-year old

[tkrame01]

I haven't been to the forum for quite some time. My daughter was initally diagnosed with a 26 degree curve a couple of years ago. She is now thirteen. We have been watching her (no bracing) and in March when she returned for more xrays her curve had progressed to 40 degrees. Her orthopedic surgeon wants to see her back in March of 2009 because she will basically be done growing by then. However...within the last two months or so we have seen a change in her spine. The curve looks worse to us and she cries that her back hurts. I've even noticed she is using pillows to sit and a bunch of pillow to sleep. When I tell her maybe we should take her back to the orthopedist, she gets upset with me because I think she is scared of what may come next. SHe has a left thoracic curve. We've even noticed her shirts fitting differently. Is it ok for me to wait to take her back to the doctor if I think the curve has progressed, possibly quickly over the last couple of months? Am I making things worse for her if we agree to wait? I just want to do what is right and try to make her happy at the same time.

any suggestions would be very helfpul.

Worrisome mom

[christine2]

Has your daughter had an MRI?

[tkrame01]

Hi Christine2

Yes, she did have an MRI initially upon her diagnosis. Sometimes I get worried that they misread the xray when I hear stories of how rare that type of curve is, but they say that they found nothing, other than the scoliosis. Do you think I should ask that the xray be re-read?

[christine2]

The left curve is unusual however not unheard of. Have you had a second opinion? We saw 3 doctors before deciding our course of treatment. I do think waiting is risky.

[tkrame01]

We have not asked for a second opinion yet during her course of treatment since we really have not delved into surgery as of yet (then I will get a second opinion). And, there aren't any other orthopedist's in my area. She is adamant about waiting until March but I just think that is too long given what changes she has recently has. I too think waiting that long may be risky. Thanks for the note.

[bas2101]

Hi-

My daughter, also 13, had a curve at initial diagnosis (at age 7) of 40 degrees. Any and all orthopedists we visited had the "watch and wait" approach. We, however, did not wait, we did numerous "alternatives." However, we also did not watch, meaning we avoided x-rays at all costs. Yet, over the past year I visually noticed her curve had progressed. When we got new x-rays, it was 68 degrees! I freaked, cried, you name it. She also had a lot of pain. A curve can rapidly progress, especially during the pubescent growing years. However, I am still not sold on surgery, at least not yet. We immediately took our daughter to Scoliosis Rehab Inc. in Wisconsin for a 2 week intensive program (4 hour a day). We also got her a Rigo Cheneau Brace, which she wears 22 hours a day. It has been 3 months in the brace, while doing the Schroth exercises 5 times a week for 45 minutes. Her pain is done while in the brace, and she looks so much more aligned (really, like a different back). She has also gained 1 3/4 inches in 3 months. It is a big commitment, but my daughter does not want surgery, and so she is following through. She also flat out refuses to go to see an orthopedist-I do not blame her. If you want to lessen the emotional pain for your daughter, you could try what I have been doing: get the x-ray, and then take it to the orthopedists without her present. Some people think I am being too over protective, but while my daughter is doing everything she can to try and correct/stabilize her curve, she does not need to hear the voice of discouragement and fear. She knows that she may need surgery, but she does not need to hear it every time an opinion is needed. The Physical therapists at Scoliosis Rehab Inc. are amazing. They will give you great hope and encouragement. Their exercises have helped many kids with scoliosis. Also, have you had an MRI? If not, demand it. I also think it is worth visiting a pediatric neurologist. Ours was much more thorough than any ortho we saw, and shed some light on the reality of spinal fusion-not a simply procedure. How does your doctor know that your daughter will be done growing in March 2009? Do you know her Riser sign? My daughter's Riser sign is 0, which is bad because she has so much growth left, and good because her spine is still very flexible (has potential to reduce some). Is you daughter braced? Go with your instinct if you feel her curve has progressed-you know best-get it checked and then do something fast. She could very well be in the height of her growth spurt. And, do not let any ortho scare you to death-they are quite good at that.

[bas2101]

PS-I see that you have had an MRI. You could get someone else to read it. I myself had an MRI that upon initial reading, was negative. On the 2nd reading, positive. If an ortho is adamant about something you disagree with, either get another ortho, or have your pediatrician write a prescription for the x-rays, and then get them done on your own. Take the x-rays to your ortho and have her read them. Or, get copies and take/send them to another ortho for another opinion. We have seen 4 orthos, 2 neuros, 5 different physicians,and numerous "alternative" therapists. Do not stop until you get what you need. If insurance is an issue, there are children's hospitals that help in that area. If I had listened to the first ortho that we visited, my daughter would now have had god knows how many surgeries with growing rods, since the age of 8 years. Do not let the ortho dictate your decisions.

[ElleBelleCurvz]

I personally find waiting stupid.
I'm not at that point yet.
But if shes hurting that bad, and she only doesn't want to go because she is afraid of whats next...well imagine what will happen if you DONT. It'll be worse for her in the long run. I know I would never expect my mom to agree with me if I wanted to wait. It's scary but less risky if she does it with a smaller curve and at a younger age. But that's you and your daughter's choice. I agree you should at least get an MRI. Plus, no one said that just because her doctor tells her she SHOULD get surgery that she WILL , it's still her choice. But whatever you do...don't say we didn't warn you. It's just a safer bet to be a parent and make her go like she should be anyway.

Oh, and don't be afraid of what your daughter may say she should still be open for her well being to at least see if surgery is even necessary at the moment. And march is WAYY too long. HOw often do you go???

[Shelgrl66]

I haven't been to the forum for quite some time. My daughter was initally diagnosed with a 26 degree curve a couple of years ago. She is now thirteen. We have been watching her (no bracing) and in March when she returned for more xrays her curve had progressed to 40 degrees. Her orthopedic surgeon wants to see her back in March of 2009 because she will basically be done growing by then. However...within the last two months or so we have seen a change in her spine. The curve looks worse to us and she cries that her back hurts. I've even noticed she is using pillows to sit and a bunch of pillow to sleep. When I tell her maybe we should take her back to the orthopedist, she gets upset with me because I think she is scared of what may come next. SHe has a left thoracic curve. We've even noticed her shirts fitting differently. Is it ok for me to wait to take her back to the doctor if I think the curve has progressed, possibly quickly over the last couple of months? Am I making things worse for her if we agree to wait? I just want to do what is right and try to make her happy at the same time.

any suggestions would be very helfpul.

Worrisome mom

Could you please tell me why this doctor has not recommended bracing in the interum? It sounds like she needs a second opinion...Not for him to wait and do nothing so by then he can just recommend a spine surgery. That is definately not an answer.

1981-Harrington/Luque instrumentation T9-L5 for 30 degree thoracolumbar curve. Dr. Shufflebarger
1990-Revision surgery-Broken hardware/flatback deformity/pseudoarthrosis-Cotrel Dubousett instrumentation with extension into sacrum. (never done correctly) Dr. Shufflebarger
1995-Revision surgery-Severe flatback deformity/kyphosis-Moss Miami instrumentation (T5-sacrum) with titanium cages (back/front/back procedure), thoracoplasty, total reconstruction with osteotomies. (surgeon did surgery while coming down with chicken pox and developed encephalitis with brain damage, etc during 14 hr surgery) Dr. Shufflebarger
2005-Car accident-spinal cord injury/myelopathy from top of rods/hooks at T5. Surgery to remove hardware, with exception of cages. Permanent damage. Dr. Campbell
2008-5th surgery pending for severe stenosis in cervical spine, as well as lumbar spine because of prior surgeries.

[txmarinemom]

Danielle's right.

Waiting until March is ridiculously long for a curve that currently measures 40°, especially when she's already in pain. It does NOT generally get better, and you are very close to losing the treatment options you have for her - short of fusion.

I'd seriously consider a second opinion. Are you seeing an SRS doctor?

Best of luck to y'all - and don't be afraid to put your foot down (with your daughter OR any ortho!).

Regards,
Pam

[mariaf]

Hi Worrisome Mom,

I'm chiming in a little late here, but I agree with what everyone else has said and you've gotten some very good advice thus far. Now my two cents:

First, you need to take action and NOT wait (regardless of how your daughter feels - she is not old enough to understand the magnitude of the situation).

I am NOT trying to give you a hard time or chastise you for taking her feelings into account - NOT AT ALL - I have a 17 year old daughter myself so I know exactly where you are coming from and I feel for you and your daughter tremendously. The problem is that waiting could do a lot of harm. My grandmother used to have a saying that has helped me immensely with my kids at times like this - she used to say to her kids when she they would not be happy with her actions: Better you cry now than I cry later.

OK, next - the MRI - yes, I would definitely have it read again. Who read it the first time? If it was the radiologist then I would definitely have a pediatric orthopedic surgeon read it or perhaps a neurosurgeon who can diagnose certain conditions such as chiari, etc. I'm not saying they will find anything but it's worth having it re-read anyway.

Please get a second or even a third opinion. You mention that there are no other orthos in your area. Can you share with us what state you live in? Perhaps there is a Shriners Hospital that is not too far from you. They are fantastic. We go to the one in Philadelphia and they will HELP you get there if you can't travel there on your own.

Hope this helps - and best of luck to you!

[ecnw]

I've called for appointments when my daughter's back seemed to change, it's not only reassurance that everything is ok, but this way the doctor can monitor what is going on. Growth suprts happen, and they can definitly increase the curve.
You have to remember you are the adult. Your daughter does not fully understand what is going on. A lot of adults can't fully comprehend what their doctors tell them, imagine being a child trying to get it. Ease your daughter's fears, tell her you need to hear what the doctor says but no discisions will be made till later (let the doctor in on this too, explain her fears).
If you can financially afford it, you might consider having a consultation with a doctor in another city in your state or a different state. If you give your location people ere can help recommend someone else. Even though I trust my daughter's doctor we still got a second opinion for course of treatment. He totally agreed with what the first doctor said. It just gives peace of mind.
Emily

[debbei]

I agree with everyone that waiting till March is not a good idea. I'm also curious why they didn't want to brace her in the interim. These things only get worse on their own, unfortunately, they don't get better.

If it were my daughter, I would bring her to a reputable 2nd opinion asap. This is time you can't get back.

Good luck,

[tkrame01]

Thank you all

Wanted to say thank you to all of you for your feedback. I have decided to take my daughter for a second opinion and to request that her MRI be read by someone besides the radiologist. We are not waiting until March of 2009 to have her seen either...I will be contacting her orthopedist this week to schedule her a follow-up appointment.

I'm so glad this resource is here!
Thank you.

[Shelgrl66]

Besides going back to this same doctor, I would most DEFINATELY check with a neurosurgeon, as they know more overall than the ortho doctors (as they are basically just looking at the bones) and orthos tend to want to do surgery, versus the neuros that do it as a last resort. I would also check with another ortho doctor afterwards as well to see if he might recommend bracing in the interim. With something like this you will want SEVERAL opinions. I wish my parents had.

Good luck to you,
Michele

1981-Harrington/Luque instrumentation T9-L5 for 30 degree thoracolumbar curve. Dr. Shufflebarger
1990-Revision surgery-Broken hardware/flatback deformity/pseudoarthrosis-Cotrel Dubousett instrumentation with extension into sacrum. (never done correctly) Dr. Shufflebarger
1995-Revision surgery-Severe flatback deformity/kyphosis-Moss Miami instrumentation (T5-sacrum) with titanium cages (back/front/back procedure), thoracoplasty, total reconstruction with osteotomies. (surgeon did surgery while coming down with chicken pox and developed encephalitis with brain damage, etc during 14 hr surgery) Dr. Shufflebarger
2005-Car accident-spinal cord injury/myelopathy from top of rods/hooks at T5. Surgery to remove hardware, with exception of cages. Permanent cord damage. Dr. Campbell
2008-5th surgery pending for severe stenosis in cervical spine, as well as lumbar spine because of prior surgeries.