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Frequently Asked Questions and Answers about Scoliosis

Through wide-ranging discussions with the Doctors and staff at the Southwest Scoliosis Institute, we've compiled this collection of the most common questions people have about adult and child scoliosis into a single helpful reference.

What is scoliosis?

Scoliosis is a disorder of the spine. It's a disorder in which the vertebrae actually rotate, and a curve is created either in the upper or the lower back.

What causes scoliosis?

We have a number of observations, a number of findings, but there's no unified theory. We're hindered in that we can't take all of the observations and put them into a road map that explains why one child with a curve goes on to need complex surgical care while and another with a curve that's seemingly the same reaches adulthood and doesn't need our services.

Is scoliosis hereditary?

Scoliosis is thought to be genetic. It's a result of expression of multiple genes, but it has something that's called variable penetrance, meaning that in each generation there is a variability in how strongly the genes are expressed, that is, how severe the curve is.

A valid question to ask is: Can it be passed on? Is it something that runs in families? And the answer is yes; scoliosis tends to run in families. It tends to run through generations in families, but to have variable effects in each generation. That is, you may have a mother with a mild curve who has a daughter with a very severe curve, or you may have a mother with a severe curve whose grandchildren then have scoliosis, but the intervening generation didn't really have any significant problem.

Can you get scoliosis from an injury?

Children can get scoliosis as a result of a spinal cord injury. One of the categories for scoliosis -- one of the causes -- is a degenerative neurological condition that affects some unfortunate children. The other source can be trauma. Often we treat beautiful young kids who've either had a car accident or a motorcycle accident or some other trauma. And as a result of loss of the normal muscle control in the spinal cord, they then develop a deformity which is secondary to their spinal cord injury.

Can the spinal injuries be caused from viral or similar diseases?

Polio was one of the most common neurological causes of scoliosis. Certainly in the '30s, '40s and '50s, when the great epidemics of polio on this continent occurred, it was very common to see children with scoliosis. Now I see many of those polio patients in my clinic with adult scoliosis as a result of their paralytic condition.

Are there environmental factors that contribute to scoliosis?

The research into the environment causes of scoliosis is ongoing, and while there are some provocative findings, I don't think that we've established clear connections between a medication, a drug, or environmental factors yet.

What other factors contribute to the onset of scoliosis curvature?

The vast majority of patients with scoliosis fall under the category of idiopathic scoliosis. That means, simply, we don't know what causes it. We don't have the unified field theories that tell us the mechanism.

However, there are those cases which are neurological, where there's some kind of spinal cord or brain injury, cerebral palsy, polio myelitis -- any one of these neurological disorders.

And there's trauma -- an induced spinal cord injury.

There are congenital abnormalities of the spinal cord and of the vertebrae which lead to scoliosis.

And finally there are the so-called developmental abnormalities, and those are the ones that are the most concerning to us. My way of describing them is that there are component parts which are made wrong at the factory -- either the vertebrae are congenitally malformed or congenitally fused together, leading to very severe curves, or the underlying spinal cord is made incorrectly "at the factory." And in some of these situations we are looking for links to drugs, medications, environmental features, environmental causes, which put children at risk when they are in the mother's uterus.

Does scoliosis always show its face in childhood?

We think of scoliosis as being a childhood disease and are generally taught that it is such. And in fact, most commonly, scoliosis is diagnosed in the juvenile and adolescent stages -- 9, 10, 11, 12 years of age. There is, however, adult onset or degenerative scoliosis, which we think develops as a result of disk degeneration, and probably is an entirely separate entity from what we commonly think of as adolescent idiopathic scoliosis.

Is the incidence of scoliosis the same among men and women?

The incidence of scoliosis in men and women is approximately the same. What's very interesting, however, is that if you are female and you have scoliosis as an adolescent or young adult, the progression rate is seven to eight times more common among girls than it is among boys. And that fact is completely unexplained. We don't understand yet what issues cause that differential progression

Is scoliosis a progressive disease?

Information about scoliosis is changing. The accepted teaching used to be that once you reach adulthood, the curves become static and do not progress. And for most patients, that may still be the case.

However, there's a subgroup of individuals where the curve continues to progress in adulthood, When I was in training we were taught that a 50-degree thoracic curve probably didn't get bigger in adulthood. Well, now we know that it can. We were taught that 40-degree lumbar curves might not get bigger in adulthood, but I see in my office that they commonly do.

So there's been an evolution in what is known about scoliosis. And one of the problems is that many general practitioners, internists and pediatricians, don't have access to the latest information making care much more difficult and challenging.

What is the prognosis for a child with scoliosis?

The prognosis for most children who come to my office is generally very good. The majority of children who are identified as having scoliosis may not need complex treatments, but they do need to be evaluated. Most often, we can assure parents that either we need to observe their child in four to six months or, in fact that their risk is so low that they really don't need to come back.

What is the prognosis for an adult with scoliosis?

With adults the situation can be more problematic. I see adult patients, particularly women, who fall into one of several categories:

Often I see young women with very large curves who have no pain. I tell them that statistically the probability of the disease progressing is 80 or 90 percent, and that untreated they may well have problems in later life. With these women we discuss their treatment options on a case by case basis.

I also see young women who have a history of scoliosis who were told their curves would not progress in adulthood. And the story goes something like this: "My curve was stable. I had no back pain. My first pregnancy wasn't terribly complicated, but after my second pregnancy something happened." Now pregnancy is a very complicated physiologic state. The hormone of pregnancy is progesterone, and what we believe is that women who have curves that were otherwise reasonably well compensated may progress under the influence of progesterone. That is, the ligaments become somewhat lax as they need to be for pregnancy and for the pelvis to develop appropriately for delivery. At the same time, the curve starts to progress, and so I'll see these young women who've had several children and they'll say, "You know, my body is changing. Something's happened." Some of those women are now experiencing pain.

Finally, there are women who come in and say, "You know, I had a small curve, and it has continued to progress throughout adulthood. Didn't seem to be related to pregnancy, but now I'm 50, 52, 55, and I really have become deformed. The trunk has become deformed. My dresses are different. I don't have a waistline anymore. My ribs are actually resting on my hip bones, and there's really been a dramatic change in what I look like. But I'm here not because I'm worried about my cosmetics. It's because I hurt. Because I have pain. It's limiting my ability to live effectively."

Do these adults require surgery?

It's serious surgery. And so I think it's critically important that before any patient has any operation of any kind that the physician sit down with that individual and explain what the risks and benefits to that procedure are. So I spend significant time in pre-operative conversations discussing what the risks are, what the benefits are, what the possibilities are, what my own personal experience has been over the last 15 years. My goal is to have the individual who opts for surgery have a complete understanding of the risks and the intended outcome.

How long is an actual surgery?

Scoliosis surgeries are complex, and there are many steps to each operation. The operation in children takes from two to three hours. In adults it takes a little longer, from about four to six hours. If surgeries from the front and back are required at the same time, as is discussed below, the surgery will take additional time.

Are two surgeries ever needed?

Adults do sometimes need more than procedure. That is they need some kind of procedure done from the front and from the back at the same time. Sometimes this can be done in a single combination operation, but other times it is best to separate the process into two procedures.

What happens after surgery?

What happens after the operation itself is done is a phase where technology and treatment options have now changed dramatically for the better.

After a routine scoliosis surgery patients are admitted to the intensive care unit where there is focused nursing care. It really is very comforting for both the patient and the family to know that there's one nurse who is completely attentive to their needs. One of the things that we do emphasize is the appropriate management of pain. For pain we put a catheter, up against the spinal cord and we pump narcotic directly onto the cord. We treat the pain right where it exists and don't have to make the patient so sleepy that they can't follow requests or commands.

The day after surgery some patients may actually sit in a chair and take one or two steps. By the third day they'll stand and walk, and by the fourth day will often be walking in the halls. After discharge, which is routinely on the fifth day, patients from out of town (and many from in town) are sent to the rehab hospital to spend another week regaining their abilities to do all of the activities of daily living.

After surgery, some patients need a brace. Modern braces are light thermo-plastic so they're easily put on and taken off by the patient. You don't have to sleep in them. You don't have to bathe in them. And you wear them for about three months. It's a far cry from the casts that individuals were put in years ago.

How long does recovery take?

If you talk to our patients, what you will hear is that there are milestones of improvement. There is the first week leading up to discharge from the hospital. And when a person can walk again and is eating regular food and putting on and taking off their brace, they really feel that they've made a great step forward.

Probably the second big milestone is discharge from rehab, and that's typically about two to two-and-a-half weeks total time from surgery.

The next big independence is driving. Some patients start to drive as soon as a month.

After that the milestones become harder to define. And yet, there comes a moment when a patient returns to me and says, "You know, the pain medication you have me on is really too strong and I really don't need it." That's a wonderful milestone to hear as a physician.

Three months seems to be when many people really regain control of their own lives. Many people go back to work about five weeks after surgery in a light-duty capacity. But there continue to be longer-term gains, and so we follow patients for years and review them at six-month or yearly intervals.

For adults in pain, what can you do?

The major reason I operate on adults with scoliosis is to manage or attempt to prevent pain. Pain is a terribly disruptive phenomena in someone's life. Pain disrupts your personal emotional life. It disrupts your relationship with your spouse. It disrupts your relationship in your work. It disrupts the relationship with your children. Pain can really ravage your life. So I think the most important job that I have as a scoliosis surgeon is to find surgical solutions to attempt to remove or alleviate pain.

How many physicians across the country specialize in scoliosis surgeries?

There are a small number of us in the United States. What's unusual at The Southwest Scoliosis Institute is that we treat both children and adults. What we provide here is a continuum of care from infant to adult, and our commitment really is to be able to care for you throughout your life. Additionally, we provide care to patients with complex curves and to patients who have had prior surgical procedures.

Why do so few doctors say adult scoliosis is treatable?

Scoliosis treatment technology has changed very rapidly and there are ways to treat these patients now. Unfortunately, there is a big information gap between the primary care physicians and the specialists around the country who treat scoliosis. I lecture to groups around the country -- to pediatricians, to primary care physicians, to internists -- to try to reeducate, to try to change some of the misinformation that's out there. The reality is that in the 21st century that we can treat scoliosis in adults and we can treat it very effectively.

Talk about the staff at The Southwest Scoliosis Institute The core strength of The Southwest Scoliosis Institute is its staff. We have a dedicated group of individuals, including anesthesiologists, nurses, spinal cord monitoring individuals and implant specialists that work with the surgical team. Our operating time, our time for each case, has decreased and the benefit to the individual patient is that their outcomes are better.

Plus, in an era when a lot of patients report that their doctors' offices are very impersonal, we have not only managed to preserve our emphasis on patient care, but we really have built on that. I'm very gratified when a patient comes in and says, "You know, your staff has treated us so well.

Is scoliosis surgery covered by insurance?

That's a very common concern: "Will my insurance cover the treatment?" Scoliosis surgery is an appropriate medical treatment and so it is covered by most insurance. At The Southwest Scoliosis Institute we dealt last year with 106 different insurance companies nationwide. We, have significant skill at managing the maze that is the modern insurance company.

When you meet with scoliosis patients, what do you tell them?

Scoliosis patients bring two things to their initial office visit. The first is typically the physical pain of their deformity. But equally important is the emotional baggage from their prior experiences with scoliosis.

While early in my career the technical act of straightening the curve was extremely rewarding, as I've gotten older I find that the most rewarding part is often the interaction with individuals in the office.

As a result, as important as the physical part of the treatment is, so is understanding what the emotional issues the patient brings to the table: how they feel about themselves, how they feel about their cosmetic appearance, and matters like these.

What we've also created at The Southwest Scoliosis Institute is a way for new patients to be linked with previous patients who are at various stages of their journey of their recovery, and have them communicate with each other. It's really valuable. Connecting potential patients with past successes has been one of the most powerful tools I have used to help my patients.

The exam room is still the most exciting part of this job. Patients come with preconceived notions. Some are skeptical. Some are hurt. Some are angry. I try to transmit my own personal excitement that I can aggressively address the deformity, and that I can successfully treat the pain that people bring with them in most cases.

Is there much scoliosis research going on?
What does the future hold?

There's been a dramatic explosion in the amount of research that is done on scoliosis, both basic science and research into the cause of scoliosis and the clinical treatment.

We're learning more and more about the fundamental molecular, genetic, and foundational causes. The future of scoliosis treatment lies in early genetic diagnosis, and biopharmaceutical treatment of the growth abnormalities that lead to curvature of the spine. I would hope in the future that we unlock the secrets of predicting which child will have a progressive curve, and more importantly, having pharmaceutical or genetic treatments that would really get rid of the need of implanting metallic hardware in individuals' bodies to correct their curves.

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