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mom678
04-17-2007, 08:05 AM
My 11 year old daughter was first diagnozed with scoliosis a year ago, and one of her curves progressed to 24 degrees (Feb. 2007). We went to our next appointment, which was last week, and the doctor told us that her curve changed to 16 degrees. My daughter and I were ready to talk with the doctor about getting a brace and were completely unprepared for these kind of results. After an initial shock and excitement, I went home and started questioning the validity of the x-ray: may be the x-rays were mixed up and we were looking at somebody else's x-ray. Anyway, I called the doctor and asked for another x-ray just to make sure. We had another x-ray done yesterday and her curve is at 21 degrees. I don't even know what to think. Is it normal for curves to change that much in a matter of days?

Spencer's Dad
04-17-2007, 08:32 AM
Hi. I'm sure you will get others more knowledgeable about this than me posting to you, but for now, welcome to the world of inexact medicine.

At least based on my observations, measuring curves is more of an art than a science. I am aware of at least two different techniques and both of them involve judgement calls by the doc. Someone on this forum once mentioned a "digital" technique, but I am not familiar with such a technique nor how it might be an improvement over the manual techniques. I once asked my son's doc about how she determines the curve and she told me there was about a +/- 4 degree accuracy range. I am also an engineer and spent a lot of years working with instrumentation and determining uncertainty involved in measurement processes and I have to say that there is probably another +/- 2 degrees of uncertainty on top of the accuracy range.

On top of all of this, I'm not sure how stable curves are in a person. I know that for Spencer at least, we could take ten X-rays in 10 minutes and get 10 different curves. Sometimes his curve measurements improved, and sometimes they got worse. When he was in his brace, of course, we were able to "correct" his curve by about 40 degrees, but even in his brace we would measure very different numbers each time. So, if a person is a little more "slouchy" on one day maybe the curve will be worse that day, or if they are standing tall on another day maybe the curve is better that day. It seems to me the spine is movable piece of equipment and is not likely to be the same every time. On the other hand, my daughter's curve almost 3 years ago measured 12 degrees and just last month it measured 12 degrees again. So as I said before, welcome to the world of inexact medicine.

It sounds to me like you are looking at at least a 24 degree curve, but probably more like about a 20 degree curve. I would be suspicious of the 16 degree number and throw it out as an outlier. Also, I would be sure you are having a pediatric ortho (if not a ped ortho surgeon) with experience reading childrens x-rays for scoliosis reading the x-ray. I would not leave this in the hands of a regular pediatrician. If that is all you have now, I would really recommend getting a second opinion from a pediatric ortho specialist.

Well, good luck and keep us posted.

Carmell
04-17-2007, 12:24 PM
Welcome.

Ditto what Spencer's dad said. There are many variables involved so getting an exact number is not possible. If ten diff docs measure the same xray, there will likely be ten diff numbers. Sometimes the apex of the curve is different. Sometimes if the patient is standing on one foot rather than both feet it makes a difference. Things like that.

What I mostly wanted to say was that having a flexible spine is a GOOD thing. That means there is good mobility in the spine and she may respond better to bracing (if that's recommended).

Don't put too much emphasis on numbers - they will change with the wind. What you do want to focus on is her overall body balance, any pain issues, anything that may affect her daily activity. Being active is one of the best forms of exercise. Unless the docs tell her not to continue being active, she should stay as active as possible.

I'm assuming she has idiopathic scoliosis. Did anyone suggest that she needs a spine MRI to rule out any spinal cord issues that may be contributing to the scoliosis? Just wondering.

I also agree that she needs to see a PEDIATRIC orthopedist, if she isn't already. Good luck and keep us posted.

mel48315
04-17-2007, 08:56 PM
Carmell,
My daughter is scheduled to get an MRI before her surgery. Is this just to check on the spinal cord or can they get a better degree of curvature? I didn't even ask all of what they are looking for in the MRI (to overwhelmed at the time). Any info on this would be great. Also how easy is it for them to damage the spinal cord during the operation?
Thanks,
Melanie

mom678
04-18-2007, 07:38 AM
Thanks for the information! I talked to my daughter about her x-rays and she told me that she was told to stand in certain position during the first x-ray and then the next time the x-ray was taken a different technician told her to stand in a different position. That would probably make a difference in in degrees. I feel like we are taking a crash course in dealing with scoliosis. We are now going to an ortho specialist, but he is not a pediatric specialist. From what I understand, he treats the majority of scoli patients in the area. If my daughters scoliosis progresses, we will be looking for a specialist outside of the area. We are 2 hours away from Chicago and 3 hours away from Indianapolis - I'm sure we'll find a better doctor if we need to.

mariaf
04-18-2007, 08:30 AM
Mom678,

I agree with Carmell and the others that you should not get too hung up on numbers and that overall body balance and alignment are most important.

I have also been told that having the curve change back and forth like that (even 5 to 10 degrees) does in fact mean the spine is still flexible and should respond well to treatment (bracing) if necessary.

Also, as mentioned, different factors have an impact on the number you are given (who reads the xray, how the child was standing, etc).

Hope this helps,

Carmell
04-18-2007, 11:56 AM
Hi Melanie,

The MRI is to check the spinal cord and surrounding soft tissues. It should be a routine thing, but it will also give you peace of mind knowing there isn't an underlying cause for the scoliosis or other problems. Let us know how the MRI goes.

I strongly encourage you to see a PEDIATRIC orthopedic surgeon, preferrably one who specializes in scoliosis. This is important. You will get better answers from someone who knows how to treat a pediatric case. Getting more than one opinion is good too. The ped ortho can be your 2nd opinion. You can get more if you still have unanswered questions.

Good luck and keep us posted.

mel48315
04-18-2007, 03:15 PM
Hi Carmell,
Thanks. We do have a pediatric ortho at Childrens Hospital in Michigan. My daughter has about 14 other specialists there and needs her whole team of dr's. I also got 4 other opinions and it is all the same....surgery. We are thinking that the reason for her curve was that she wore a back brace for 8 months for a school bus accident. Prior to this she had no curve. Within a year that the back brace was off she developed Kyphosis and scoliosis. I tend to think it is because the brace weakened her stomach muscles. I don't know what else it could be....the MRI will tell if anything else is going on then??

Thanks,
Melanie

Aussiemum
04-18-2007, 09:57 PM
Hi there,
I was told by my specialist to always go to the one place for my daughters x-rays for consistency. Also make sure they know how to take a Scoliosis X-ray. My daughters first ever x-ray was taken lying down!!!! They are always supposed to be 3 ft - standing up - from the rear x-rays WITH protections for ovaries on girls!!! Make sure they put the lead plate over the pubic area to protect these organs.
Also people - I just went out and purchased an art portfolio carrier!! It makes it a lot easier when you have to cart off a lot of x-rays around to specialist!!!

Cheers
Del

Lab Dog
04-21-2007, 05:20 PM
I agree on using the same radiology dept. Its kinda like having a mammogram, you want to go to the same radiology unit from year to year so the equipment is calibrated the same and if possible, to have the same technician take the xray. My son's doc likes to specify which techs take the scoli xrays and only wants one othotist to make the braces.