Not Great News: A Reflection on the Lack of Follow-Up Protocol for People with Spinal Fusions
This is Part 34 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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Every month, I host a free online Fusions Support Group where folks join to hear and share scoliosis and fusion experiences in a safe place with others who live every day with it, and sometimes people join if they are considering surgery and want to learn more about it. Each time, I am amazed to hear more of the ‘same but different’ fusion stories, and observe the incredible resilience of ‘fusioneers’ who often struggle with pain, discomfort, and lack of mobility following surgery.
One of the ongoing themes is how doctors are not helpful after surgery, and how there is NO FOLLOW-UP PROTOCOL for people with fusions.
This is crazy! The more I think about it, the more it upsets me.
But I digress...
Two days ago everything was going great and then BAM! my back went into spasm.
OUCH
My first thought was “OH NO, not again!!”.
And then the next thought was “WHY? WHY ME? WHY NOW?”.
Of course, I already knew the answer: scoliosis, fusion, asymmetry and blah blah blah.
And as the spasm took over my lower back and pelvis, I slumped back to my car, turned on the heated seat, and just sat there in a daze, not being able to think any more. The pain was too overwhelming. I knew that every effort to move was going to hurt for the rest of the day... if not for several days.
Sigh.
This used to happen much more frequently but, in recent years, thanks to my dedicated bodywork practice, and lots of supportive care, it only occurs once in a while.
When it does, the pain and dysfunction is shocking—and makes me understand why painkillers are so popular!
Last time it happened, there was a very clear path to the spasm: It all started with a trapped hummingbird in the rafters of my greenhouse and my clearly ridiculous attempt to free it by standing on an unbalanced ladder while madly waving around a butterfly net to coax the panicked bird to safety. The bird was freed, but my back went into spasm.
Remind me to not do that again.
But this time?
I have been so good recently! Been doing lots of gentle yoga, and I was just saying last week that my back has been feeling great! But unfortunately, I continue to struggle with a bad left knee—I am signed up for a knee replacement some day when the Canadian medical system catches up from its chronic delays—so I know that my stressed knee is the main culprit. It causes me to limp, forcing me to compensate everywhere else. I do my best to stay physically strong and mentally mindful—and usually that works—but sometimes it’s just not enough.
The good news is that I know what to do:
Get on the floor.
Breathe.
Do my favourite gentle movements.
Breathe.
Make an appointment with the local acupuncturist or massage therapist or both.
Drink lots of water. Take a painkiller. Eat an edible.
Breathe. Sleep. Repeat.
Two days later, I can feel it dissipating, but I have to constantly remind myself to take it slow; that it will feel better soon; that I can postpone all my supposedly important activities and appointments; that taking care of myself is top priority, even if it’s very inconvenient. This is good news.
The NOT great news is that I know there is no point in seeing a doctor. Of all the practitioners I considered calling for help, NONE of them are doctors.
Although the orthopedic spinal surgeons are masters at inserting the hardware and fusing our spines, they are pretty much useless with anything afterwards… unless revision surgery is required.
In Part 27 of this blog, I write in more detail about how doctors don't usually give recommendations for self care, and in general, they do not provide satisfying solutions for pain, even if it is caused by the surgery that they performed (ie: broken rods, infections, allergic reactions, loose hardware, etc). I know there are likely liability issues for them if they recommend non-medical professionals, or exercise systems / modalities, but I do not really understand why they cannot, at the very least, make some general recommendations about finding a fusion-focused specialist, as there are several of us out there!
It is SO frustrating, depressing, demoralizing - (insert your own word here________) - to go through a body-altering, life-changing surgery that is meant to be beneficial, but instead causes fear, suffering, pain, and discomfort—and be given absolutely NO INFORMATION OR SUPPORT! In fact, I have heard far too many stories about people returning to their original surgeon with problems, hoping to be heard by a compassionate and helpful ear, but instead they are dismissed, disregarded, mocked and told that it’s all in their head - (insert your own word here _________!) - and then sent away to figure it out (or just plain suffer) on their own!
Doesn’t this feel wrong?
Especially when you think about how it is common for teenagers to have the initial surgery before the age of consent (16), and far before they can possibly understand the impact of such a big decision on their body, mind, and soul. I had my surgery at 14, so it never really felt like my choice. In some ways, I was coerced into the surgery when the doctor said, “You can wear a metal brace 23 hours a day for three years and then still maybe need the surgery, or you can just do the surgery and get it over with in one year”. Snap! Who would ever choose a brace for three years?
Of course I just ‘did’ the surgery to get it over with and, fast forward 38 years, I am still not over it! I had no clue….
Which brings me to the more NOT great news. I recently opened Facebook and found this provocative comment from a non-surgical scoliosis doctor who does not believe in fusion and instead works with the alternative exercise system of Scolismart, which appears to be quite helpful to many, but is unfortunately not widely available.
“The hardware of a spinal fusion surgery is only rated for 20 years. So what happens after that?”
WHAT?
First of all, were any of us told this when we had fusion? The fact that surgery is most commonly performed on teenagers, this just gets them to their mid 30s! Wait, what?
Come to think of it, while investigating options for my knee replacement surgery in my 50s, I was told to wait til my 60s as the hardware only lasts about 20 years. The knee surgeons generally hope that people with knee replacements only need one surgery to last for the rest of their lives.
But in all my years talking with orthopedic surgeons who specialize in scoliosis, not one of them have ever mentioned this, and for some reason I never really thought about it until I read that facebook post!
I totally understand why it’s not mentioned. It’s a big and scary subject!
Medical technologies are changing all the time and each person’s spinal fusion is unique. Nobody can possibly predict what will happen to anyone in 20 years. Plus, it’s not exactly the kind of thing that a surgeon wants to bring up while talking to a potential fusion patient!
It’s important to note that there are some people with fusions who have been living with their hardware for much longer than 20 years without having serious problems. And, as many know, I had my own hardware removed after 21 years, so I cannot speak to the reality of having the hardware in for longer than that.
It’s also interesting to note that most revision surgeries are not so much due to hardware failure, but more so for either correcting the original surgery (like for Flat Back Syndrome) or for fusing a second curve. The unfortunate fact that aging patients with hardware and fusions often get shunned by their medical professionals without receiving any help or alternative solutions makes me wonder how often complaints of pain and discomfort may actually be related to aging hardware? They may not want to address it with the teenagers, but you would certainly think it would be mentioned and investigated in older patients, right?
Our bodies are like a house we live in and, just like in a house, we need all our systems to function as best as possible for a comfortable quality of life.
What ever happened to Customer Service? Warranties? Returns? Guarantees? Parts repair?
For example: What happens when a contractor insists he can help you get more value from your slightly crooked and sunken home by leveling out the foundation a little bit. After he is finished, it looks much better from the outside—more symmetrical and upright—but inside, the floorboards are now cracked, the windows don’t open properly, and the light switches are all glitchy, as the electrical cables are strained inside the walls. You go back to the contractor for help, but are told that he is not responsible for the inside of the house - only the outside. He tells you that he completed his task and that he has nothing else to offer. He suggests you try giving it a good clean and maybe a new paint job, and all will be fine. You do your best to repair what you can, but your quality of life is never quite the same…
Doesn’t his insurance cover it? Does yours? And even if it does get repaired, will it ever be as good as before? And who covers the lost time, energy, emotional turmoil, and costs to deal with it all? Who is in charge around here?
Fusions Support Group meets monthly online - register for free HERE.
Read the next blog post here.
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