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Part 2: Persistent Spinal Pain Syndrome Treatment: What Actually Helped After Spinal Fusion Surgery
- Tahitia Timmons MSN, RN,CDP®,CDE® CPDC,PCC
- 6 days ago
- 10 min read
A breakdown of treatments, costs, and what actually made a difference
Introduction
This is the second article in a two-part series detailing my journey with Persistent Spinal Pain Syndrome following spinal fusion surgery. In Part 1, I explored how my identities as a Black woman with autism influenced my healthcare experience and analyzed how capitalism has turned pain management into a lucrative industry.
What to Expect in This Article
In this article, I will share the treatments that were effective for me and examine the intricate relationships between our economic system, mental health, and chronic pain. Please note that the therapies I discuss may not be suitable for everyone suffering from chronic back pain, as my situation was particularly complex. I dealt with severe scoliosis prior to a motor vehicle accident, a connective tissue disorder, autism, and the challenges of menopause simultaneously.
My Journey Through Pain Management
After my complex anterior/posterior fusion from pelvis to ribcage in 2019, I found myself navigating a healthcare system that was ill-equipped to address my persistent pain. Over the years, through a process of trial and error—and with thousands of dollars in out-of-pocket expenses—I gradually uncovered approaches that offered me genuine relief. Along this journey, I also gained troubling insights into how our economic system influences both the experience of pain and the treatment options available.
Alternative Therapies for Persistent Spinal Pain Syndrome: What Actually Worked
When conventional medicine left me with unmanaged pain, I embarked on a journey through various alternative and complementary therapies. Some provided transformative relief, others offered minimal benefit, and a few were expensive disappointments. Here’s my personal experience with what actually made a difference:
Aquatic Therapy: Movement Without Gravity
Perhaps the most transformative treatment in my post-fusion journey has been aqua-therapy. The moment I entered the pool, I experienced an almost immediate sense of relief as the water’s buoyancy counteracted gravity’s constant pressure on my fusion.
Research strongly supports this approach. A 2022 randomized clinical trial published in JAMA Network Open found that therapeutic aquatic exercise led to significantly greater alleviation of chronic low back pain than conventional physical therapy, with benefits lasting up to 12 months. For patients with spinal fusions specifically, the water environment allows movement without compression, enabling strengthening of supporting muscles that might be otherwise difficult to target.
I was lucky and was able to add these weekly sessions, but the average cost of this treatment is about $100 each. I paid entirely out-of-pocket because insurance at the time classified this evidence-based therapy as “experimental” despite robust research supporting its efficacy. The facility I went to ProSwim Fitness, unfortunately is no longer in business but it was incredibly helpful and I am forever grateful to my trainer Marty.
Massage Therapy: Essential Maintenance
Regular massage therapy became a cornerstone of my pain management strategy. Finding practitioners who understood the complexity of working with extensive spinal fusion was challenging—no aggressive techniques, careful attention to the muscles supporting my immobilized vertebrae, and awareness of how compensatory patterns created new pain points. I worked with several amazing practitioners and learned to figure out who would bring relief and who might be too aggressive.
The relief was substantial but required consistency. At $120 - $200 per weekly session, this costs over $6,000 annually with no insurance coverage. Because of the cost I often would stretch these as far apart as I could manage. A systematic review in Pain Medicine confirmed that massage therapy provides meaningful short-term benefits for chronic back pain, particularly when combined with other approaches. For fusion patients specifically, addressing muscle tension in the unfused segments can prevent cascading issues.
Modified Yoga: Rebuilding Body Awareness
Traditional yoga was initially disastrous for my fused spine—many postures simply weren’t possible or caused pain flares. However, I did find some wonderful yoga instructors online who worked with scoliosis clients who were aware of fusion limitations. I was able to create my own highly modified practice focusing on:
Gentle movement in the unfused segments of my spine
Strengthening my core without stressing the fusion
Breathing techniques to manage pain flares
Body awareness and proprioception exercises
Research in the Journal of Alternative and Complementary Medicine has demonstrated yoga’s benefits for chronic low back pain, with modified approaches showing particular promise for those with structural limitations. The average for twice-weekly classes in person might cost approximately $200 monthly, again without insurance coverage.
The Humble Heating Pad: Affordable Relief
I joke that I should own stock in heating pad companies given how frequently I use them! This relatively inexpensive intervention provides reliable relief during flare-ups. The science supports this experience—heat therapy increases blood flow, decreases muscle spasm, and modulates pain signals.
A systematic review in the Cochrane Database found that heat therapy produced small but meaningful short-term reductions in pain and disability in patients with acute and sub-acute low back pain. For me, it’s been a daily essential—I’ve even invested in battery-powered heating pads for mobility.
Lumbar Support Belt: Practical Protection
For activities that strain my back—grocery shopping, household chores, even standing for extended periods—a high-quality lumbar support belt has been invaluable. It reminds me to maintain proper posture and provides additional support when my muscles fatigue.
While research on support belts shows mixed results for preventing injury, for those of us with existing spinal conditions, they can make the difference between accomplishing daily tasks and being sidelined by pain. I did not buy a custom-fitted belt they can cost around $275, but I did find a very inexpensive one online that has been worth every penny. That said I probably spent more than $275 figuring out what did not work.
Cryotherapy: A Complicated Relationship
My experience with cryotherapy has been mixed. Full-body cryotherapy chambers were a disaster—my autism-related sensory sensitivities made the extreme cold intolerable, triggering rather than relieving pain.
However, targeted cold therapy to specific inflamed areas has occasionally provided relief during acute flare-ups, though I generally find heat more effective for my particular condition. This highlights an important consideration for neurodivergent individuals seeking pain treatment—sensory sensitivities can dramatically impact treatment efficacy.
Note, cryotherapy is not covered by any health insurance to my knowledge and the average is around $30-100 depending on where you go.
The Pilates Experiment: Costly Lesson
I invested significantly in Pilates, spending around $600 monthly for private sessions with a certified instructor. Unfortunately, despite the instructor’s best efforts to modify exercises, the limited flexibility in my extensively fused spine made many fundamental Pilates movements impossible or counterproductive.
This expensive experiment highlighted an important reality: not every evidence-backed therapy works for every patient, especially those with complex surgical histories like mine. What works for someone with localized back pain or a single-level fusion might be counterproductive for someone with multi-level fusion.
The Mental Health-Pain Connection: A Two-Way Street
During a recent appointment, a clinician noted that I had screened as being at risk for depression. “You know,” they said with a concerned expression, “pain and depression have a cyclical relationship. When we address the depression, we can potentially reduce your pain by as much as 50%.”
For a moment, hope flickered—until they delivered the devastating caveat: “Unfortunately, the wait time to see a psychiatrist is currently about a year.”
This interaction encapsulated the maddening reality many pain patients face: we’re often told our mental health impacts our pain (which research confirms is true), but then denied timely access to mental health services that could help.
The Neuroscience of the Pain-Depression Cycle
The relationship between pain and mental health is bidirectional and well-documented. A 2020 meta-analysis in The Journal of Pain found that individuals with depression experience pain more intensely and are more likely to develop chronic pain conditions. Conversely, chronic pain increases the risk of developing depression and anxiety by 2-5 times.
This relationship has neurobiological underpinnings:
Both pain and depression involve similar neurotransmitters (serotonin, norepinephrine)
Chronic pain activates stress responses that alter neural pathways
Prolonged pain sensitizes the nervous system, lowering pain thresholds
Depression reduces production of natural pain-relieving endorphins
In practical terms, this means improving mental health can genuinely reduce pain, while reducing pain can improve mental health—creating either a virtuous cycle of improvement or a vicious cycle of deterioration.
Barriers to Integrated Care
Despite the Mental Health Parity and Addiction Equity Act of 2008, which requires insurance plans to provide equal coverage for mental and physical health conditions, significant barriers to mental health care persist:
Most health insurers do not reimburse mental health treatment at the same rate as physical health treatment
Many impose arbitrary limits on therapy sessions
Continuity of care is disrupted when patients are forced to switch providers if their therapist moves out of network
“Medical necessity” determinations are often more stringent for mental health than physical health services
For me, the year-long wait to see a psychiatrist would mean continuing to suffer with pain that might have been substantially reduced with appropriate mental health treatment. This represents a systemic failure—a healthcare system that recognizes the connection between mental health and pain but fails to provide integrated care. I want to add that I have someone I see BUT they are not a psychiatrist so they can not prescribe medication.
Capitalism and Chronic Pain: Beyond Individual Solutions
The Work-Pain Paradox
Our economic system creates a paradoxical situation for those with chronic pain: work often exacerbates pain, but we need to work to access healthcare and survive financially. This creates impossible choices, particularly in the United States with its inadequate social safety net.
Research from the Bureau of Labor Statistics found that nearly 8 million Americans work while experiencing daily pain that interferes with their activities. Many of us push through pain to maintain employment, potentially worsening our conditions in the process.
For me, this has meant continuing to work despite pain, making accommodations where possible, and paying for out-of-pocket treatments that allow me to remain productive. The privilege of having work that can be modified (unlike many physical jobs) hasn’t escaped my notice.
The Productivity-Pain Connection
Capitalism’s emphasis on productivity shapes both how we experience pain and how society responds to it. Our economic system values continuous productivity above all else, creating environments where:
Taking breaks for movement or rest is discouraged
Ergonomic accommodations are seen as costly extras rather than necessities
Stress is normalized despite its well-documented impact on pain perception
Worth is tied to productivity, creating psychological distress when pain limits capacity
A 2019 study in the European Spine Journal found that prolonged sitting was associated with a 1.5-2 times increased risk of developing chronic low back pain. Yet many workplaces still lack policies supporting regular movement breaks or adequate ergonomic equipment.
The Medical-Industrial Complex
Our healthcare system itself operates as a capitalist enterprise, with profound implications for pain patients:
Procedures (like surgeries) generate more revenue than comprehensive pain management approaches
Pharmaceutical solutions are prioritized over time-intensive behavioral approaches
Insurance systems create perverse incentives that fragment care
Profit motives distort research priorities and treatment availability
Consider this stark contrast: my spinal fusion surgery cost approximately $120,000 and was fully covered by insurance. Yet the evidence-based treatments that help me manage the resulting persistent pain—massage therapy, aquatic therapy, specialized movement approaches—are considered “complementary” and largely uncovered, despite research supporting their efficacy.
Toward a More Just Approach to Pain: Individual and Systemic Solutions
For Individuals Navigating Persistent Spinal Pain
Based on my experience, here are strategies that may help others with Persistent Spinal Pain Syndrome:
Advocate for terminology change: Push providers to use updated terminology like “Persistent Spinal Pain Syndrome” rather than “Failed Back Surgery Syndrome”
Seek multi-modal care: Look for providers who understand the biopsychosocial nature of pain and integrate physical, psychological, and social approaches
Find community: Connect with others experiencing similar challenges through support groups or online communities—the validation and shared wisdom are invaluable
Document everything: Keep detailed records of treatments, responses, and insurance interactions to advocate effectively
Experiment cautiously: Try different evidence-based approaches, but set clear timeframes and criteria for determining what helps
Challenge dismissal: When providers minimize your pain or attribute it solely to psychological factors, calmly but firmly advocate for comprehensive assessment
Prioritize mental health: Recognize that addressing depression and anxiety can genuinely improve pain, and seek these services even when barriers exist
For Healthcare Providers
If you work with patients experiencing persistent pain after spine surgery:
Update your terminology: Move away from “failed back surgery syndrome” toward “persistent spinal pain syndrome” to reduce stigma
Screen for mental health issues: But don’t stop at screening—provide pathways to timely mental health care integration
Consider intersectionality: Recognize how race, gender, neurodiversity, and other identities shape both pain experiences and healthcare interactions
Validate pain experiences: Even when imaging shows “successful” surgical outcomes, take patients’ subjective pain reports seriously
Explore comprehensive approaches: Look beyond medications and procedures to movement-based therapies, psychological approaches, and social supports
Advocate within systems: Push for insurance coverage of evidence-based complementary approaches and integrated care models
For Systemic Change
Ultimately, addressing the challenges of persistent pain requires systemic transformation:
True mental health parity: Enforce existing parity laws and strengthen requirements for integrated care
Evidence-based coverage decisions: Expand insurance coverage for approaches with demonstrated efficacy for persistent pain, including complementary therapies
Workplace accommodation: Develop policies that support movement breaks, ergonomic adjustments, and flexible scheduling for those with chronic pain
Research priorities: Shift research funding toward understanding chronic pain conditions and developing integrative treatments
Medical education: Improve pain education for all healthcare providers, including understanding of biopsychosocial approaches and implicit bias training
Universal healthcare: Move toward a system that prioritizes comprehensive wellbeing over procedural profitability
Living with Persistent Spinal Pain in an Imperfect System
My journey with persistent pain continues. Some days are better than others. I’ve learned to pace myself, to advocate effectively, to find joy despite limitations, and to connect with others who understand this experience.
The system remains deeply flawed—capitalism continues to shape both how we experience pain and how we treat it. But by sharing our stories, demanding better care, and advocating for systemic change, we can gradually shift toward a more compassionate and effective approach to persistent pain.
For now, I’ll continue using my heating pad, attending my water therapy sessions, practicing my modified yoga, and speaking out about the changes needed to create a healthcare system that truly serves those in pain.
I’d Love to Hear From You
What treatments or approaches have you found helpful for persistent pain? Have you experienced barriers to accessing mental health care for pain-related depression or anxiety? What systemic changes do you believe would most improve care for those with chronic pain conditions?
Share your thoughts in the comments below, and thank you for joining me on this two-part exploration of Persistent Spinal Pain Syndrome and the systems that shape our neurodiverse pain experiences.
About the Author: Tahitia is a health equity diversity and inclusion consultant who advocates for a trauma-informed approach to healthcare. With personal experience in the LGBTQ+ community and professional expertise in health equity, she brings both personal insight and professional knowledge to complex health topics. After undergoing complex spinal fusion surgery in 2019, she has become an advocate for improved approaches to persistent post-surgical pain management.
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