Aging with a Spinal Fusion
This is Part 41 of a serial blog originally titled 'Martha Carter's Healing Journey'. Curious about the earlier posts? To start from the beginning, read Part 1.
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Martha with her mom, Marnie, at about age 4 when she still had a straight spine. She was diagnosed around 7 years later.
Intro - Martha’s Observations
I guess it’s hard for everyone to accept growing older.
I struggle to embrace the changes, watching everything start to sag - and every day noticing new wrinkles on my face… on my neck, on my knees!!
Greying hair, thickening around the middle. Flab. Lots of flab.
I know it’s not just about how we look.
But when I saw a picture of my back from behind recently, I was extra shocked!
We almost never get to see ourselves from behind.
Regardless of all my hard work to stay upright and as balanced as possible, I am perplexed to see that my back body is sagging too. My curves and twists seem to be increasing, even with a spinal fusion!! My right thoracic convexity seems more pronounced than I thought, and it certainly looks much ‘hump-ier’ than the one in my imagination. Although come to think of it, on bad days my hump feels even bigger. My concave side seems more collapsed than ever before, and I don’t remember seeing so many wrinkly folds of flesh under my left shoulder blade. Is that because my scoliosis is getting worse? Or simply because I am flabbier? Or a bit of both?
I know I am losing height.
Is that because of my scoliosis? Or is that just normal aging? Or is it a bit of both?
Martha with her family (3rd from left), just after diagnosis; two years prior to surgery.
And what about the aging fused area of my spine? What about the immobility caused by the ten vertebrae - from T6 to L3 - that are ‘glued together’ as one bone? What problems does that stiffness cause over time? And—another question—what about the area of the spine above and below the fusion? The ones that are prone to overuse leading to degenerative disc disease? How to manage that over the years?
Does anyone have answers to these questions? Is anyone else looking for answers?
At least I had my hardware removed, so I don’t have to worry about that. To read the story about that go HERE.
Hardware For Life Comes With Problems
Most people keep their hardware in for life, almost always suffering chronic issues in one way or the other. Apparently, in some countries, it used to be that the hardware would routinely be removed after the fusion had solidified in the year following surgery. I am not sure what is happening in other places now, but I believe that most of the modern fusion techniques involve so many screws into the bone that it would likely be too destabilizing to remove them in many cases. But why is the option of hardware removal never offered in North America?
An example of a broken titanium rod. How on earth?
For those who have hardware permanently attached to their spines, it is an ongoing worry, causing body fear and uncertainty around mobility. We feel the hardware - we sense it as a foreign object in the middle of the body.
And it often causes problems.
Firstly, hardware in general is not meant to last more than 20 years. Yet the majority of fusion patients are teenagers, so fusion surgery only gets them into their 30s. I have never heard ANY mention of this critical piece of information as it relates to spinal instrumentation, although it was raised as a huge concern for my knee replacement last year.
Nevertheless, the hardware used in scoliosis surgery can fail in many ways - the stainless steel rods sometimes break (it is crazy, but what essentially happens is that the torque of the spine resists the metal enough to break it); there can also be corrosion, infection, metal poisoning, loosened or detached hooks, and more.
And the PAIN is real. Not only is the body ‘stuck’ thanks to the stiffness of the fusion, but there can also be discomfort from the hardware in the form of rubbing, poking, vibrating or throbbing of the hooks and screws—not to mention the occasional insight the rods give to a chosen few, allowing them to predict the weather by aching when the barometer changes!
It’s truly shocking to me that there is not more easily accessed support for people with fusions. Especially as we age.
How Many Of Us Are There?
Quick math (although it is hard to find numbers): Scoliosis spinal fusion started to be widely available in North America starting in the 1960s - approximately 60 years ago. According to Google there are around 40,000 of these surgeries performed per year in the US alone, so I am going to make a conservative guess and double that for the world, for a total of 80,000 per year. Multiplying that by 60 years adds up to (at least!) 4.8 million surgical scoliosis patients who are living with complex hardware and bone fusion comprising a large part of their spinal column. These people range in age from 14 to 80 years old, more or less.
There are 10x that number living with smaller fusions unrelated to scoliosis.
We are the first generation in the history of humankind to have millions of aging people walking around with hooks, rods and spinal fusions affecting everything in our lives. Yet, for some reason, there is still no standardized follow-up protocol for the patients struggling with many questions and nobody to ask.
Different Procedures - Post-Surgery
Martha lay in a Stryker frame just like this for three weeks post-surgery, being flipped every four hours to ensure that the spine stayed immobile, while shifting the body to avoid bed sores.
One of the complications is that not all scoliosis surgeries are alike, and not all patients struggle with post-surgery in the same way.
For example, in the early days, the surgeons were extra cautious after surgery, requiring patients to lie flat in bed for several months to ensure that the fusion took hold. For those early patients like myself, the long bed stay caused the body to weaken in general, and an enormous amount of scar tissue formed that impinged the movement of my ribs (Thank goodness I subsequently had that massaged away. Check out blog #5 for that part of my story!).
The more contemporary approach is to get each patient standing and moving as soon as possible after surgery. This improves healing immensely, but it doesn’t change the enormous shock to the system that the body goes through. Almost all invasive surgery forces a traumatic imprint onto the body - whether it be biological, psychological, or social (Read more about this in blog #28. No matter what the approach, or the age of the patient, there is no ‘undoing’ the surgery, so ultimately everyone has to learn to live with it).
Surgeries at different times of life
Another complication is that different folks are affected differently during different times of life.
Martha lying flat in her body cast, circa 1974. This photo shows her on a gurney that she rolled onto for special outings.
For example:
All fusioneers, and teenagers in particular, often feel fear and/or experience self-esteem and body image issues.
Middle-agers are usually in the midst of their career or raising children—or both—so taking time off for rehabilitation is extra challenging - and for mothers carrying children there are added obstacles.
Seniors often have additional issues such as osteoporosis or other health problems that can make surgery more risky. Plus healing can be slower.
Revision surgery folks have usually been suffering with their initial surgery for years so they are often in a state of emergency by the time they go for a second surgery. Either the first surgery was done badly causing flat back syndrome, or they have an infection, broken hardware, degenerating discs, or nerve issues such as neuropathy, partial paralysis and drop foot - or some combination of these conditions.
MORE QUESTIONS THAN ANSWERS
Regardless of the type of surgery or age of patient, there are way more questions than answers.
Questions such as…
Where are the recommendations for maintaining health for life?
What can I do to make life more comfortable? Lifestyle tips?
Where can we find helpful resources to relieve pain and find more mobility?
How to ‘stay in shape’ with rods, hooks and fusion?
How to move and exercise safely?
Which activities are ok and which ones are not?
Who is available for fused people to talk to who will truly understand what they have gone through / are going through?
Where to learn more about your own specific situation, including the procedure you went through?
Who holds that information years later?
Who can find it?
Who might have suggestions where to find it?
For younger women, is it safe to get pregnant and have children?
For older people, is it worth having this surgery later in life?
Once again, I wonder who has the answers?
An x-ray of Martha's back following the Harrington Rod surgery in 1974.
I would love to think that there is someone or some organization somewhere who is creating a database that could hold the answers to all our questions; one place we could all go for help and resources as uncomfortable things happen to our fused bodies as we age. A place to reassure us that all will be ok. I have been told that some data collection has been happening for about 20 years, so that still leaves out 40 years worth of patients whose realities have not been recorded. I guess that group, including me, are the pioneers of it all!
For now, the only solution that I can think of is to keep reaching out and sharing stories with each other as that is often the best way to learn. What do the doctors know anyway?
None of them know what it feels like, so doesn’t it make sense to share and learn from each other?
And this is one of many reasons TOPS will be offering four fusion-oriented initiatives this year(!):
An ongoing monthly online Fusions Support Group where folks have a safe space to share stories with others going through the same thing. Hosted by Samamkaya Yoga in NYC and facilitated by myself. Free. Last two dates of this season are: May 16 and June 20, and then we start up again in September.
A new online FUSION FORUM coming in Fall 2024 to help build awareness around the needs of aging Fusion patients. Facilitated by Martha Carter, each Forum will feature a guest speaker. The forum will be recorded and available for listening after the event. Free. Email us for dates if interested.
Ongoing back care retreats with renowned scoliosis experts who can also address the concerns of fusioneers. To see a list of upcoming retreats go HERE.
A new in-person and online LOVE YOUR FUSION RETREAT on Vancouver Island, BC, Canada, featuring fusion specialists Stacy Joyce from Yoga for Fusions; Martha Carter from Somatics for Fusions; Patti Horvath for Creative Writing, and Elyse Archer for Somatic Experiencing. Sliding scale and Scholarships available.
Save the dates: May 30 - June 1, 2025. Email us if interested, and stay tuned for more information - coming soon!
I’m curious to hear what this blog post might have brought up for you, and what questions and/or answers you have found over the years? Maybe we can find answers to our own questions together and build our own database. To discuss! Possibly at one or more of the online or in-person initiatives referenced above. :)
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