QUESTIONS & ANSWERS
Scoliosis is a disease that generates lots of important questions & answers by those afflicted by the disease, their family, friends, and even doctors and medical staff. We have collected some of the most common questions to answer and share here. If you don’t see your question, at the bottom of the page is a place to submit your question.
Scoliosis Questions & Answers – It’s not just a Disease of Children
Scoliosis is one of the more common diseases of the spine, affecting 12 million people worldwide. The majority of these individuals have few problems, but for a small percentage of individuals with progressive curvature, the problems can be very severe. A particularly debilitating form of the disease produces incapacitating pain and progressive deformity of the spine. In untreated cases, there is a disfiguring curve and often a large ump in the back. Patients with this form of scoliosis have increasing difficulty exercising as they get older and are limited by pain. Some have difficulty breathing as the disease progresses.
The natural history of the disease in women is different than in men, and despite the fact that men and women have the same incidence of scoliosis, women have progressive disease seven times more frequently.
“The general public should know that we have made huge strides in the treatment of scoliosis,” says Dr. Richard Hostin. “Most people, including scoliosis patients, believe the problem is treated as an adolescent wearing a back brace. What they don’t realize is that in many cases it continues to get worse. They go to their family doctor in pain and frustration, only to be told that as an adult few options exist.” Questions & Answers by doctors specializing in this disease can help educate the public and provide hope to those afflicted.
Surgical risks are minimized with a very experienced surgical and nursing team. Spinal cord injury, which is the serious concern of all patients, is very rare but occasionally does occur. National statistics indicate that spinal cord injury occurs in less than 1 in 100 cases.
One of the primary frustrations is that only a handful of U.S. surgeons have extensive experience and interest in specializing in these difficult procedures. In many cities, there is no Orthopedist Surgeon focusing and specializing on the care of adults with scoliosis, and therefore, many individuals who would benefit from the Southwest Scoliosis Institute are unaware of the opportunity to get better — to ‘get their life back.’ If you are an adult living with scoliosis or have a child with spinal deformity, please call the Southwest Scoliosis Institute. Our help is available to you now. To learn more, click on any of the questions & answers below:
What is scoliosis?
This is one of our most frequent questions. 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 the 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 a 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? ases?
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 environmental 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 unified field theories that tell us the mechanism.
However, there are those cases that are neurological, where there’s some kind of spinal cord or brain injury, cerebral palsy, poliomyelitis — 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.” 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 8, 9, 10, 11, 12 years of age. There is, however, adult onset or degenerative scoliosis, which we think develops as a result of disc 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 a 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 narcotics 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 discharged 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 phenomenon in someone’s life. Pain disrupts your personal emotional life. It disrupts your relationship with your spouse, your relationship in your work, and 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 many ways to treat these patients now. Unfortunately, there is a big information gap between primary care physicians and specialists. I lecture to groups around the country – pediatricians, primary care physicians, internists and to try to reeducate them. I 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 them 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 on our team. Our team also consists of anesthesiologists, nurses, spinal cord monitoring individuals, and implant specialists. We all work together. Our operating time, our time for each case has decreased significantly over the years. 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 it is covered by most insurance plans. At the Southwest Scoliosis Institute, we dealt last year with over 100 different insurance companies nationwide. We have significant skill in managing the maze that is the modern insurance company. If you have some questions about your insurance plan coverage, please call us.
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.
As a result, as important as the physical part of the treatment is, so is understanding the emotional issues. The emotional issues that the patients bring with them to the office. Some of these issues are how they feel about themselves, their cosmetic appearance, and matters like these.
Is there any type of past patients and new patients communication?
This is one of my favorite questions. What we’ve also created is a way for new patients to be linked with previous patients with similar journeys. We have a database of patients who have agreed to share their experiences with new patients. These existing patients are then matched with other patients with similar journeys. This allows them to communicate with each other and help each other along the way. It’s really valuable. Connecting potential patients with past successes has been a very successful tool at our institute. It has been one of the most powerful resources 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. Others are hurt. And still, some are angry. I try to transmit my own personal excitement that I will be able to 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. Research both in basic science and research into the cause of scoliosis and 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. The 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. No more metallic hardware that is used in individuals’ bodies to correct their curves.
What happens after surgery for a child, adolescent, or young adult?
After scoliosis surgery in a younger patient without medical problems, the recovery can be accelerated. After the procedure, the surgeon will decide if admission to the intensive care unit or to the floor is appropriate. The pain will be controlled using the smallest doses of narcotics and the patient will be encouraged to walk the next day. Our patients have gone home as early as the second day, but typically will require 3-4 nights in the hospital and then will be discharged home. No special hospital bed, food, brace, or therapy is generally required after going home, and usually, patients can resume school at least part-time at two weeks postop. We allow our patients to typically resume their allowed sports 6 months after the surgery.
If you don't see your question listed....
Please email it to Robbie Reed at Rreed@swscoli.com and we will review it and hopefully add it to the list. Thank you.
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