Help for my teenage son

[momof5]

Hi Everyone!

I have been on the Adolescent board but have a question that I would like to pose to all of you.

First of all, my son is 15 1/2. He was diagnosed last July w/Idiopathic Scoliosis. We did PT and finally took him to Shriner's. He has 3 curves - 49*, 64* and 49*. We went to Shriner's in January and met with a dr who recommended surgery. He ordered an MRI and we scheduled to go back. Well, in the meantime this dr left Shriner's. So, last week we met with a new dr who said that he may not need surgery if the curves don't progress above 70* before he stops growing. He is mostly citing the study published by the AMA in 2003 which followed untreated Scoliosis cases for 50 years and found no significant amount of physical problems directly associated with the Scoliosis. He says at this point it is strictly cosmetic.

Now, given the risks of surgery, I would be happy if he didn't need surgery. He is extremely athletic and strong, has no symptoms other than the way his back looks. However, I am very concerned that he will begin to have pain and possibly difficulty with his lungs, etc. if it is left untreated. I don't want him to need surgery in 20 years when the risks are much higher, not to mention that it can't be done by Shriner's after he is 18.

So, I would like to know from some adults what are your difficulties that you can directly relate to your Scoliosis? Especially any of you that have remained active through the years and specifically tried to counteract the effects with exercise, etc.

Also, my ds said the way his back looks now doesn't bother him, but how will it look in 20 years? I know it is hard to say, but I can't find any good pictures or anything to give me an idea. He is pretty balanced now because of the compensatory curves, but I wonder how that will change as the curves progress?

Sorry, I know this is a lot of questions, but we are really confused by this new information and I am just looking for answers and more questions to ask the next time we meet with the dr.

Thanks in advance for any help!

Katy

[Theresa]

Hi Katy, You have a difficult decision to make. I have known about my scoliosis since I was about 12. Nothing was ever done at that time. You could tell that I had scoliosis, if you knew what scoliosis was. I didn't have my first surgery until I was 48. By that time my curves had reached T-79 and L-48. I also have quite a bit of rotation and a pretty good size hump. At times I am glad that I didn't have the surgery earlier because I still have pain after the surgery. Before the surgery the pain was on and off, but more on the last few years. The problem I am having now is that my body is fighting and resisting the corrections. My muscles have been a certain way for so long and worked differently due to the curves. Now that I am pretty straight, my muscles are having a hard time being retaught the proper way to work. I think if I was you, I would wait at least a year, see how much, if any, change there is to your son's curves and then rethink the idea. It doesn't sound like he is in any pain right now. You still have time for the lung issue also, I was just starting to have some problems at 79 degrees. I hope that I have helped you some.

[sweetness514]

Hi Katy,

I agree with Teresa. He's not in pain and even if he got surgery in his twenties, he would still be very young and achieve great correction. IMO if it isn't broke don't fix it, especially if it has not affected his lungs and heart(usually happens later on, with bigger curves), and surgery has risks on many levels.

[Karen Ocker]

He is mostly citing the study published by the AMA in 2003 which followed untreated Scoliosis cases for 50 years and found no significant amount of physical problems directly associated with the Scoliosis. He says at this point it is strictly cosmetic.

I read this study some time ago. Not all the curves in the study were all that large;the larger the curve the more unhealthy it is.

I also had triple curves as a teen--after uninstrumented surgery to balance them--they continued to progress into adulthood and I ended up with larger "balanced" curves affecting my breathing.

Triple curves, from what I have read in the scientific literature, and also my experience, compress the heart and lungs sooner than double or single curves.

Your son's curves: 49*, 64* and 49* are significant. Every spinal disc is already being unevenly compressed and down the line it will cause degeneration/pain in adulthood.

It's every mother's nightmare to consider surgery and maybe that consulting doctor sensed you are not ready for that decision so he held out hope.

This is my opinion after a lifetime of living with this: If a curve is large enough to significantly "show" it is probably unhealthy.

Monitor your son's and see how he feels. I was very athletic as a teen, diving out of trees into lakes, walking long distances, climbing trees, swimming etc.

It made no darn difference; I ended up with a 100deg thoracic curve which really didn't hurt much until just before my surgery.

[The Professor]

Reasons for surgery?

I think the main thing to consider is that you have to weigh the benefits versus the risks and trade-offs of the surgery.

The benefits, at least at this point, seem to be mostly cosmetic. From most of the studies I've read, the amount of correction of the deformity (the "rib hump") will vary; in a few cases, it may have even worsened, but most patients see some relief.

Have you had his vital capacity measured? With a curve of that magnitude, it's likely that his VC is compromised, and this might not even show up until he's put up to some kind of respiratory challenge, such as prolonged exercise. Since he's still young, it's more likely that his chest muscles will be able to adapt to the shift in position and that he will regain any lost VC, if he does have a reduction due to the scoliosis.

OTOH, there's not always compromised breathing in scoliosis patients. I have dual 34* cervicothoracic and 28* thoracolumbar curves, and my VC is within normal tolerances. I've had this measured numerous times, as I often have students perform the VC measurements on me as a lab exercise when I teach anatomy & physiology. It really seems to vary from patient to patient. I do know that I have problems with extremely deep breathing, however, and I often get winded climbing stairs. So the symptoms vary, and it really depends on how it affects your son as to whether or not the compromises in pulmonary function are really that much of a problem.

Most patients see increased VC within 6 months post-surgery, but as to whether that increase in VC is maintained over time is not fully known. In more severe cases, the surgery can actually be life-saving, especially if VC is reduced to <10% of normal tolerances.

There is also risks to the heart that should be considered, especially if the thoracic curve is to the left. There is a slight risk of hypertrophy in patients with more severe leftward thoracic curves, but I'm not sure of how many patients die of cardiac complications due to scoliosis. Much of this is because autopsies are not always performed, and in most cases the coroner will simply mark the cause of death as "cardiac failure" without denoting whether or not it was a consequence of severe scoliosis. Thus, we really don't have an accurate measure of how much of a risk there is to the heart due to scoliosis.

The other main consideration is pain. I didn't have pain from mine until about age 30, and mine was not even discovered until just a few months ago. The curve is so rigid that there's little hope that surgery would even help the curvature that much, and patients with curvatures like mine seldom report much pain relief from fusion operations.

That also brings up another point-- the more flexible the curve, the more likely he is to see correction of the curve through surgery. The flexibility of the curve can be assessed through x-rays by examining an AP or PA versus an x-ray in the supine position. If the curve lessens in the supine position, the curve is more flexible and is more likely to respond to surgery. The curves usually become more rigid and inflexible after skeletal maturity.

There are also a number of risks associated with the surgery, including the increased risk of degenerative disk disease and the risk of repeated operations if any of the hardware fails or the curvature progresses despite the fusion. I honestly do not know how many patients this affects.

I'm not trying to talk you out of the surgery, but just want you to know the risks and benefits that are associated with it. I'd agree with the previous post stating that you should probably monitor and wait for about 6-9 months before making a decision. Look to see if the curve does progress; if it has stabilized or improves, you might decide not to, but if you and your doctor decides that he needs the surgery, it is *much* better to have this done at an earlier age than later in life because the amelioration of the symptoms is much better while he is still young and more flexible.

Hope this helps.

[Karen Ocker]

For professor

What is your line of expertise?

I was extremely fortunate: At age 60, my certainly "stiff"-previously-fused spine was corrected by 50%. Pre-op: 30 cervical/80 thoracic/40 lumbar---reduced to half and holding after 3 years--no pain.

I had lost 30% of my lung volumes; I still have reduced volumes but they do not interfere with my daily living. For example I can climb 3 large flights of stairs without getting winded--but I do work on keeping fit. Also, I am almost 64 so age declines are also a factor.

I recently was hospitalized for a hystetectomy and found a lot of old info in some of the doctors I met. It seemed like they used old books for info. One resident told me that after 19 no one gets operated on for scoliosis. I told

him to throw out the old text book and look at me!!

Scoliosis is such a sub-specialty that the only really up-to-date info is from the NSF or the Scoliosis Research Society and /or publications from other respected Spine Journals.

I have dual 34* cervicothoracic and 28* thoracolumbar curves, and my VC is within normal tolerances. I've had this measured numerous times...

Your curves are not even considered large enough to be in the operative range---unless you were measured a long time ago and they progressed. That happened to me. The first sign I noticed that got me suspicious was getting easily out of breath. After lung/heart disease was ruled out as a factor I consulted an adult scoliosis specialist with experience in previously fused spines--- and I got those large measurements. I forget the exact number but breathing issues are usually not apparent until the thoracic curve
is 70-80+ deg. With triple curves like mine, in older individuals, it occurs sooner because the chest is further shortened with 3 curves.