Memories, Realizations, Reflections… and Questions.... (on the effects of scoliosis procedures, especially ‘corrective’ spinal fusion)

This is Part 27 of a serial blog originally titled 'Martha Carter's Healing Journey'. In Part 26, I share key TIPS for any exercise or movement practice you might engage in - inspired by my hand-drawn stick figures in the ‘10 Simple Exercises for Scoliosis and Fusions’ we featured for Scoliosis Awareness month in June. In Part 25, I find inspiration in my veggie garden and a theme that has been emblematic of my experience throughout this healing journey: patience. Missed the earlier posts? Read Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7, Part 8Part 9, Part 10, Part 11, Part 12, Part 13, Part 14, Part 15, Part 16, Part 17, Part 18, Part 19, Part 20, Part 21, Part 22, Part 23 and Part 24.



Thanks to my work doing private consultations, classes, workshops and retreats, I have been meeting many wonderful ‘scoliotics’ and ‘fusioneers’. I am always amazed at the stories we share, and I continue to admire the incredible resilience shown by every single person with this confounding condition. 

Recently, I worked with a lovely woman in her mid-50s, who has lived and survived a very similar scoliosis story to me - more or less. She was diagnosed with scoliosis as a teenager, and at about age 15, after years of braces, traction, surgery, and body casts, she got out of her last brace, went back to school, and moved on with her life.

Fast-forward 40 years, and she is seeking comfort for a very uncomfortable body. She was fine for a long time, but with the compression of aging, she started to experience pain and numbness. When things got bad a few years ago, her persistence helped her find a physiotherapist who assisted her to attain better alignment and strength, which fortunately eased a lot of her pain. She learned quickly that if she didn’t do the exercises, the pain would return, so they have become part of her regular routine. 

Nevertheless, she still feels unsatisfied with her general lack of understanding around her own scoliosis, plus she continues to have trouble with a sense of “crookedness in every part of her body”. She says she has ‘given up’ on doctors because she has found them to be mostly unhelpful. She came to me looking for advice about what are ‘good’ and ‘bad’ movements. What is she ‘allowed’ to do, and what is she ‘not allowed’ to do?

This led to a very lively discussion which brought forth many memories, realizations, reflections, and questions for both of us.

MEMORIES… FOR BOTH OF US…

In brief:

Sudden diagnosis; sudden change of life
Traction - casts - braces…
Unhelpful doctors…
Confused parents
A horrible teenage time
Embarrassing - humiliating - frustrating moments 
Kids laughter as they throw rocks at the hard brace
Wearing baggy ugly clothes to hide
Feeling excluded
Years of forgetting - ignoring - denying 
Nobody else understands
No one to talk to
Just bucking up and dealing with it
Getting ‘over it’ and getting on with life…

REALIZATIONS

Surgery Affects the Whole System

Surgery affects the whole system. For example, over the years, my twisted body has led to a pronated foot, an arthritic knee, a twisted hip, a chronically displaced SI joint, a huge rib ‘hump’, a fractured vertebra above my fusion, one raised and twisted shoulder, nerve compression that leads to numb fingers, a tilted head - plus issues like headaches, difficult digestion, breathing limitations, and compressed organs!

Most of my life, doctors have looked at these conditions as separate issues… But thanks to years of study, exercise, and body work, I have slowly started to understand - and feel - how they are all connected. 

For example, when I lie flat on the floor, my crooked body flops more to one side than the other. Anyone can quite easily see the ‘map’ of my imbalances as listed above, from my feet to my head. The twists and curves torque my skeleton, pushing and pulling it into odd positions which affect posture, alignment, and strength, not to mention nerve and organ positions. It should be no surprise that over time, these imbalances can cause significant systemic issues. 

Another example: During this past year, I discovered that my ‘arthritic’ knee is not only because I twisted my knee... In fact, it turns out that it is largely due to the nerve compression in my lumbar spine. My fusion ends at L3, the third lumbar vertebra that supports the nerves that go directly to the knees. Although I have seen many specialists for my knees, it is only the ‘alternative’ non-medical practitioners who pointed this out to me. Since understanding this, I have started to explore how decompressing my lumbar spine and being mindful of my pelvic alignment actually helps my knees! When I had stem cell injections for my knees, they didn’t just inject the actual knee, instead, they also followed this logic by focusing some injections on the related lumbar discs to ease compression. 

EVERYTHING is connected.

Medical Procedures Can Create Numbness

Another realization is that surgery can create numbness… not just in the body, but in all aspects of the affected person’s life. It may be helpful in straightening the spine, but it also takes away natural fluidity and sensation. This causes a sense of stiffness in the whole body; the braces and casts and other procedures create a kind of ‘armour’ that can linger for years after the surgery… physically and emotionally. One client explained to me that to survive her teenage years of doctors and bracing, she became ‘tough’ to the point where she didn’t let herself feel anything anymore. It has taken her years to understand how that has translated into tension and hardness - which she is now working on unlearning. 

As we learn to ‘soften’ our tissues, the rest of the body will respond in myriad ways. When we give ourselves permission to be gentle with ourselves, and let go of our hard-earned armour, we can find more freedom. Empowerment.

No Warnings - No Follow Up

It continues to astound me that DOCTORS NEVER TALK ABOUT THESE THINGS!!  

We are not warned about possible long term side effects, nor are we taught about our fusion and hardware and how it supports our curves and twists. We are not shown exercises to help ourselves, nor are we given any guidelines about how to explore our mobility; we are not given any emotional support, and there is generally no place to go for follow up.

You might think that the surgeons (or someone on the surgical team) would want to mention a few things before and after surgery. You know, little things, like…

  • Changing the alignment of your whole body will likely cause other physical issues over the years.

  • Leaving several ounces of cold metal hardware attached to your spine will undoubtedly affect the whole body in some way or another. 

  • The ‘hardware’ may be uncomfortable, or it may even get infected or break!

  • Because the fused part of your spine cannot bend or twist, the vertebrae above and below often get overused, which can lead to adjacent disc disease - or even fractured vertebrae.

And perhaps most important of all: There ARE things you can do to help yourself, such as scoliosis-specific exercises and other types of supportive care!

Of the dozens of people I have met who have gone through spinal fusion surgery for scoliosis, only a very few have had doctors who suggested any kind of holistic approach or supportive care. I hear over and over again that when problems arise years after surgery that most doctors say there is nothing else to do. There is generally no official place to go for follow up, and patients rarely find others to speak with who have shared the same experiences. Another regular comment I hear from folks who had surgery as teenagers is that they stop talking about their feelings about their back / spine very young as they are told they are ‘fixed’, and they often feel nobody understands anyways. This leads to another familiar comment we hear - that people learn to just ‘suck it up’ and deal with it alone; to not ‘bother’ anyone, and to not ask for help. 

In my case, it took about 20 years and an emotional breakdown before I found myself finally talking about everything I went through starting at about age 12. I have been thinking about why it took me so long to face it, which leads me to these reflections and questions.

REFLECTIONS

Thinking About Trauma

First of all, most of us are quite young and resilient when we go through scoliosis procedures. Because of this, it is common, just like with me, and with my recent client, to recover from it, and then forget about it as soon as you have recovered, and to never talk about it again. Or at least not until the negative effects of surgery catch up in later life and you need to find a scoliosis specialist!

But just because it is not talked about doesn’t mean that it does not have deep effects.

For people who have surgery, the trauma is quite distinct - physically and emotionally - and it is often dismissed as just ‘part of the procedure’. It starts with the scary diagnosis that leads to many scary doctor’s appointments, cold x-ray tables, horrific traction beds, tortuous casting procedures, painful brace-fittings, painful surgeries, visible scars, and potentially years of embarrassment, a sense of isolation, and low self-esteem. 

Another Non-Discussion

I have met enough people to understand that some sort of trauma is common to all of us... and in most people’s case, the doctors NEVER mention it before, during, or after. And it is not something that just goes away over time. If anything, it goes deeper.

Even after years of physical training, supportive care, and yoga for scoliosis, I still experience moments where I feel like I have the body cast on. Or sometimes, when I am in a yoga class where we are required to use lots of props, I will suddenly feel sad and claustrophobic as the negative memories of being in traction or on the stryker frame come rushing back. 

It has taken me a long time to connect those dots!

QUESTIONS

ALL of the above got me thinking…

  • Why don’t doctors talk more about the potential side effects of surgery, and the ways to mitigate the issues that come up over the years? 

  • Why can’t doctors at least give us and our parents or caregivers a ‘heads up’ on how to look after ourselves to avoid problems as much as possible?

  • Why doesn’t the medical system recommend specific exercises for scoliosis - with or without the surgery?

  • Why is it so hard for people with scoliosis to get helpful information, especially in the years after their surgery?

TOPS is a start...

This is partially why I created TOPS: to offer information, education, and community. 

We are not medical professionals, and while we don’t have all the answers, we do have some.

And the main answer is that there IS something you can do. Education and Supportive Care can help! There are a variety of techniques, practitioners, products, procedures, etc, that can help us feel better. 

All we need to do is be willing to explore our own movement. 

If we gain more mobility and ease in our bodies, we generally experience reduced pain. Our chronic conditions CAN change for the better if we just give them a chance. And the more things improve, the easier it is to keep working on them (see this past blog post of mine about my journey - and discoveries - in supportive care).

Another great way to learn new approaches is to attend a scoliosis-targeted class, workshop and / or retreat, where people have the bonus (and very important opportunity) of connecting and sharing with others who truly understand. 

Eventually, hopefully, over time, the medical system will learn from our communion, our knowledge, our experience, our feedback, our offerings… from ALL of us in this community. Until we figure out a way to ‘fuse’ (pun!) that connection, and to get this information into the hands of doctors and surgeons and specialists far and wide, you can do your small part by sharing TOPS with anyone you might come across who is looking for a resource or a hand. It can be lonely out there. I know I speak for both me and my client in saying - if only we’d had somewhere or someone to turn to back then! 

On that note: we are always here to answer your questions. Feel free to drop us a line or to share your story. And please write us with YOUR questions for the medical community - and any ideas you might have!!