Martha Carter Talks About Her Healing Journey - Part 16
Scoliosis: A Confounding Condition
This is Part 16 of a serial blog post. In Part 15, I share a treasure trove of information that’s All About Fusions, alongside my wild experiences with casting, traction, surgery, immobilization, stryker frames, and more, back in the day. In Part 14, I provide detailed information on three popular exercise methods that specifically target scoliosis: Scolio-Pilates, The Schroth Method, and ScoliSMART. Missed the earlier posts? Read Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7, Part 8, Part 9, Part 10, Part 11, Part 12, and Part 13.
Scoliosis is a really confounding condition! The more I try to explain it, the more I realize that it is full of contradictions.
Nobody knows why it happens, or who will get it. Given that every scoliosis is unique, the effects can be so different for each person, which of course makes it difficult to compare notes. It is all hard to predict, and there is no consistency in outcome from person to person or recommended treatment from one doctor to another.
Let’s take a look at some of these inconsistencies, including:
1. How it is that regardless of the size of the curve, there is no standard amount of pain;
2. How sometimes it runs in families and sometimes it doesn’t;
3. How there is no known cause and no way to predetermine whether it will get worse or not;
4. How sometimes bracing helps and sometimes it doesn’t;
5. How surgery works for some but causes problems for others;
6. And finally, how sometimes curves change with age and sometimes they don’t.
1. SMALL VS. LARGE CURVES: UNPREDICTABLE PAIN
Some folks don’t even know they have scoliosis, whereas others are ruled by their scoliosis.
There are people who have huge curves and little pain, and others with small curves and huge pain. And of course, there is everything in between.
For example, I know two women, one with a very small lumbar curve and the other with two very large curves in her spine.
The first woman took a while to figure out why she had so much chronic back pain. For years she looked for solutions, but no doctor or massage therapist, nor anyone else, was able to help her. It took her a long time to figure out that she had a mild scoliosis. As soon as she made the diagnosis, she started learning targeted exercises, and then she learned Yoga for Scoliosis. These days, as long as she continues to do her exercises and stays strong, she feels fine and has no pain.
The other woman developed her large curves during adolescence. Her body was very crooked which made her torso very compressed, with two large humps in her thoracic and lumbar areas. Although surgery was recommended for her, she really didn’t want it - she did not have pain and felt okay in her body. When her parents asked the doctor what he thought, he answered with the surprising response that if she was his daughter, he would never let her have the surgery! That comment confirmed their decision. And that woman is now in her 60’s - very active and, as always, pain free.
2. IT RUNS IN THE FAMILY AND DOESN’T RUN IN THE FAMILY
It is common knowledge that scoliosis mostly affects female adolescents, but it also affects males. It can show up at different times over the course of a lifetime.
It appears in otherwise healthy individuals, regardless of fitness level, race, or body type. Sometimes it is hereditary and shows up in several generations of one family. In other cases, there is only one person in the family who gets it.
There is nobody else in my immediate family with scoliosis, however, I have two cousins from my father’s side who both have mild curves. One wore a brace for a while, which stopped the progression, and now it never bothers her. My other cousin has struggled with nagging back pain for years, but was only diagnosed with a very mild curve in her 50’s.
I know one family where the mother developed scoliosis in her adolescence and had fusion surgery. Nobody else in her family had it. Her back always bothers her a little bit, but in general, she has been able to lead a very normal life, staying active, working a regular job, and giving birth to three boys.
Even though they were very fit and athletic, two of her sons developed scoliosis; one of them with two very extreme curves over 60 degrees. He never wanted surgery, so he has managed his pain through exercise and nutrition. He is now in his 30’s and very crooked, but he has very little discomfort and remains athletic. His brother’s scoliosis stayed small and has never caused him any issues.
3. NO KNOWN CAUSE AND NO WAY OF PREDICTING PROGRESSION
There is no known cause, although there are a few theories. The most significant research to date points to a combination of hormones, genetics, neurotransmitter levels and growth factors that cause the spine to grow crooked.
Researchers are hoping to develop a test to at least help predict who may develop scoliosis, which could lead to some early intervention treatments. But even if there is a way to anticipate who will get it, there is no standard prognosis of how it will progress. Sometimes the curves change very slowly and never get worse, but in many cases they change very fast. This makes it extremely tricky to decide which treatment to choose.
For example, I have heard from many parents that their child’s scoliosis seemed to appear suddenly and without warning. From one bathing suit season to the next, there is suddenly a visible asymmetry of the spine. The teenager doesn’t usually notice it as it is impossible to see their own back, plus during adolescence everything is changing anyway. How is the teenager supposed to know what are normal growing pains vs. pain from asymmetry?
Nevertheless, every scoliosis diagnosis leads to a series of doctor visits which can become a stressful marathon of treatments and warnings. For many people, the information they are told is scary, and emotional, and may lead to even more significant medical treatments like bracing and surgery.
This is when scoliosis is the most frustrating. It suddenly appears - and takes all the attention. One day, everything is normal, and the next day, the teenager’s life is forever changed. They may not even feel anything, but they are forced - sometimes very quickly - to make many important decisions about their bodies and their futures; often with very little concrete information.
4. SOMETIMES BRACING HELPS AND SOMETIMES IT DOESN’T
Many teenagers with scoliosis get a recommendation from their doctor to wear a brace during their growth years to keep the curve from getting worse. Often this helps, but in some cases it doesn’t, and the scoliosis gets worse anyway.
Wearing a brace can be exasperating for everyone involved. The braces are very uncomfortable and awkward, and, even worse, they make it extremely hard to look ‘normal’ and ‘stylish’, which are usually quite important life goals for teenagers! The fact that the braces have to be worn for 23 hours per day means that all activities, including sports and going to the prom, are done with their brace on.
When I was told that I could either wear a brace for three years and still maybe need a fusion surgery, or just go ahead with the surgery, and it would all be over within a year, it seemed that surgery was the obvious choice. Wearing a brace for three years was already a horrendous idea, and then they were telling me it might not even work? Why would I do that? Of course I opted for surgery.
I often wonder what would have happened if I had chosen to try the brace. Maybe I could have avoided surgery after all? Maybe my curve would have stopped naturally like my cousin’s curve, never bothering me again?
How were me or my parents supposed to understand the full significance of one decision or the other? How is anyone ever supposed to make this choice?
5. SOMETIMES SURGERY HELPS AND SOMETIMES IT DOESN’T
Many people have benefitted from scoliosis surgery, and the techniques are improving all the time. Like everything to do with scoliosis, results vary. There are some people who have surgery and it never bothers them afterwards. Unfortunately, there are also many people who develop serious troubles after their surgery.
I know one woman who had surgery as a teenager and eventually became an emergency room nurse who stands on her feet for hours at a time. She swears her back never bothers her and, in fact, she completely forgets about it. She is not particularly athletic, nor does she do targeted exercises. She is one of the lucky ones as her back simply never bothers her at all.
Then there is my friend who had Harrington Rods put in around the same time as me (aka during the early years of the procedure, where we both had to lie around for months).
Where I quite quickly wanted to be active and athletic again, even against doctors orders, she chose to stay very cautious.
Over the years, I had quite a few problems with my back, which led me to decide to have my rods removed. I am still fused, but removing the hardware reduced my discomfort and also allowed me to feel more confident with movement like dance and yoga that helps me to maintain my mobility and strength. But I have learned that some of my earlier problems likely came from me experimenting with movement a little too enthusiastically - and without enough awareness.
In contrast, my friend has never had any problems, but she does admit to being afraid of hurting herself, so she leads a careful life. She attributes her problem-free back to the fact that she has been risk-averse all her life, staying quiet and cautious.
Like her, there are many people who never have any issues with their surgery. However, I also hear nightmare stories about broken rods, failing hardware, situations like degenerating discs or flatback syndrome that require revision surgeries, and very rare situations like infections from the hardware.
A quick fix surgery feels so tempting, but in light of all the stories out there, how is somebody supposed to decide what to do? You can’t do it one way and then change your mind. You certainly can’t do the surgery and then undo the surgery. And if you wait to have a surgery later, it may be difficult to find a surgeon willing to do it.
In light of all of this, how is anyone ever able to feel confident in their decision?
6. SOMETIMES CURVES CHANGE WITH AGE AND SOMETIMES THEY DON’T
Finally, there is the confounding fact that sometimes scoliosis curves ‘change’ later in life.
Some folks who have lived problem-free all their lives may find that their curve suddenly starts progressing with age. Of course it is quite normal for people to experience some spinal degeneration later in life, but occasionally, it can be extreme and fast. Curves can change suddenly for the worse; often without warning. The good news is that sometimes they can improve.
For example, many women notice that their curves change during pregnancy and/or menopause. Why? It appears to be related to body changes related to hormones.
For instance, during pregnancy, muscles become looser and the joints open up as the body prepares to give birth. With careful awareness, this is a chance to stretch, decompress and possibly repattern a scoliotic spine.
Along those same lines, during menopause, the body becomes stiffer as the muscles tighten. It is well documented that people with scoliosis often experience hypermobilty, with loose ligaments causing joint instability. For those whose spines have always felt unstable, the tightening of muscles during menopause may finally offer some relief.
Yes, scoliosis is a confounding condition!
There is no one way to have it or to deal with it.
And how it affects each person not only depends on their own particular curve pattern, but also on the knowledge of the healthcare professionals they work with, along with many other cultural and socio-economic factors.
For example, not everyone has the same resources or education or accessibility to treatment.
Every country’s medical system is different, along with varying numbers of skilled surgeons. Most surgeons work in large city centres, so this makes things more complicated for people in rural areas. Each person’s family situation, including emotional and financial stability, will affect treatment decisions. Each person’s overall mental and emotional health will also affect the outcomes of their chosen treatment.
No wonder we call ourselves ‘Scoliosis Warriors’!
Teenagers, parents, and older folks as well have to be bold and brave as they negotiate the ‘battlefield’ of options around treatments. With varying amounts of information, each person has to figure out their own situation, and make decisions based on what they feel will work best for them.
One thing is for sure - scoliosis is for life. Everyone may be different, but rest assured we all face similar challenges.
With that in mind, it is important to keep talking about scoliosis and to share as much information as possible about every aspect of this confounding condition.
With time, who knows what we, as a collective human resource, may uncover and discover?
In my next post, I will explore what kind of research is being (and has been!) done in order to attempt to answer some of these confounding questions…