"Managing Life After Multiple Spinal Surgeries as an AS Patient: A Personal Journey"
- uniquelymeandlovin
- Apr 26, 2024
- 15 min read
Updated: 3 days ago
As a patient with Ankylosing Spondylitis (AS), it is relatively uncommon for us to undergo spinal surgeries. However, I have faced a total of seven surgeries. Of those, four were spinal fusions. Interestingly, due to my body’s quirky tendency to develop fluid that required removal, you could argue that six of these procedures involved fusion-related interventions. As you read through this timeline of my surgeries, you’ll understand why each one was necessary and the reasoning behind them.
To provide a clearer picture, I’d like to guide you through each surgery—explaining why there were so many and what each one ultimately contributed to my journey.
Surgery 1: L5/S1 Posterior Lumbar Interbody Fusion 2/17/2015
My very first spinal surgery, an L5/S1 Posterior Lumbar Interbody Fusion, took place on February 17th, 2015. At the time, we believed I was dealing with a severely damaged disc. However, getting insurance approval for the surgery was a battle that lasted nine long months. By the time my spinal surgeon was able to operate, the disc space had narrowed to almost 1 millimeter—a critical threshold where surgery becomes nearly impossible due to the lack of space to maneuver the necessary tools between the vertebrae.
After spending a few days in the hospital, I managed the pain relatively well, but the recovery process was filled with uncertainty. While my spinal surgeon did his best to prepare me, having never been a spinal surgery patient himself, he could only describe how things should feel, not how they would feel—especially given that I unknowingly had active Ankylosing Spondylitis (AS) at the time.
For months after the surgery, the pain lingered—it was constant, though not as excruciating as it had been before the fusion. Leading up to the surgery, I relied on a wheelchair due to a combination of severe pain, muscle weakness, and frequent falls. The recovery process from this first spinal surgery was hard, not only because it was my initial experience with such a procedure but also because the underlying AS, which we hadn’t yet identified, made healing even more challenging.
Surgery 2: L5/S1 post-op Emergency Surgery 03/16/2015
My second spinal surgery took place on March 16th, 2015, just a month after my first. This time, it was an emergency. I had developed a significant pocket of fluid that was pressing on my spinal cord. Leading up to the surgery, I had a follow-up appointment around March 13th, 2015, after noticing at home that a baseball-sized swelling would appear when I stood for any length of time. Along with this, I was still dealing with intense pain, numbness, and weakness.
During the appointment, my spinal surgeon ordered a comprehensive bloodwork panel and an MRI. The tipping point came when I lay on the X-ray table and tried to move my right leg—it wouldn’t budge. I could feel electrical pulses coursing through it, but no matter how hard I tried, my brain’s commands didn’t translate into movement. I’ll be honest; I was completely hysterical. It was terrifying!
The MRI results and bloodwork came back quickly. My surgeon immediately called my husband, instructing him to get me to the hospital for emergency surgery. That evening, at 10:30 p.m., in an otherwise empty pre-op and surgical area, my surgeon operated to remove what turned out to be gallons of fluid that had built up. The recovery from this second surgery essentially reset my healing process, starting me back at square one. Nevertheless, with time, my pain, numbness, and weakness improved, and I was ultimately happy with the results despite the setback.
I’ve since come to believe that my tendency to develop fluid was likely related to my then-undiagnosed autoimmune disease. My body seems to react poorly to the introduction of hardware. At that time, we still had no idea I had Ankylosing Spondylitis (AS), as it wasn’t yet completely visible on the imaging we had taken.
During my recovery from the first and second surgeries, progress was slow. Interestingly, my physical therapy sessions began revealing pain that was more prominent in my thoracic spine rather than my lumbar spine. Concerned about this unusual pain, my physical therapist urged my spinal surgeon to order a full spinal MRI. This imaging ended up being the breakthrough moment.
At my follow-up appointment, my surgeon reviewed the MRI results and admitted he had been wrong to assume I couldn’t possibly be in as much pain as I described. He told me that day that the imaging revealed that I had Ankylosing Spondylitis (AS), a disease I had never even heard of even with a medical background. He explained that my spine was one of the worst he had seen in 25 years of practice—second only to that of a motorcycle accident patient with everything it had going on. This was a turning point for both of us.
We discussed the next steps and began searching for what I’ve come to call the “unicorn” of healthcare: a truly great rheumatologist. That day, I also decided that this spinal surgeon would be my go-to doctor moving forward. Here’s why: if a doctor cannot admit they were wrong, it’s time to find a new one. Medicine is an ever-evolving field, and no doctor is perfect—nor should we expect them to be. What we can expect is for them to work collaboratively with us, seek out answers when they don’t have them, admit when they’re unsure, and fight as hard for us as we do for ourselves. My spinal surgeon demonstrated all these qualities and more, and he was instrumental in teaching me how to advocate for myself as a patient. This skill would come in extremely helpful down the road and we didn't realize here just how much. Ultimately, it took another four years of searching before I found the incredible rheumatologist I still see today.
In the future, I plan to share more about how AS patients can effectively advocate for themselves. For now, though, I’m endlessly grateful to the healthcare providers willing to grow and learn alongside me as I navigate this journey.
Surgeries 3 & 4: Left and Right Sacroiliac Joint Fusions 9/3/2016
On September 3rd, 2016, I underwent SI joint fusions to address the intense pain I was experiencing. Imaging had revealed that my SI joints were slipping, inflamed, and showing damage caused by the Ankylosing Spondylitis (AS) we had only recently discovered during my recovery from the first and second spinal surgeries. The SI joint fusions were done within a couple of months of each other, and they brought me significant pain relief and were easy to heal from.
AS, by its very nature, causes severe and relentless pain, so I diligently attended routine follow-ups and was eventually referred to a pain management clinic. Most of the time, the pain became manageable with their help. However, I still haven’t started on Humira at this point. It felt like it took an eternity to find a competent rheumatologist, and once I did, navigating the insurance process for biologic approval added another layer of delays.
I can’t even count how many times I heard dismissive remarks like, “Well, your spine is perfectly aligned, so it can’t be AS.” My response was always, “It better be aligned—I just paid a highly skilled incredible spinal surgeon a lot of money to ensure it’s in the right position.” Equally frustrating were comments like, “We know you have an autoimmune disease, but we’re not sure which one, so we’ll do nothing until test results come back.” This was even though my spinal surgeon had provided imaging showing classic signs of AS.
Eventually, I found the incredible rheumatologist I still see today. At my first appointment, she spent over 2 hours with me, let me cry out all the frustration, and immediately began with a care plan. With their guidance, I was finally able to start Humira, and within a few months, I began to feel significantly better. From there, I resumed living a relatively normal life—albeit with the need for frequent rest and without working. I did well and managed my condition until mid-2018 when new challenges arose.
Surgery 5: My L4/L5 Decompression Spinal Surgery 9/17/2019
As we had anticipated with Ankylosing Spondylitis (AS), further damage occurred despite Humira significantly slowing the disease's progression. Imaging revealed that my L4/L5 spinal canal had become dangerously narrow due to extra bone growth, compressing the nerves and causing my symptoms.
To address this, we decided on a decompression surgery, which was performed on September 17th, 2019. Compared to my previous spinal fusions, this recovery was relatively smooth. I was doing so well post-surgery that by October 2020, we were able to move houses. The decompression surgery achieved its goal, offering me substantial relief without the need for another fusion at that time.
I should add that my spinal surgeon was candid about the uncertain long-term outcome. He told me, “I don’t know if this decompression will give you five days or five years, but given your relatively young age, it’s worth a shot.” Thankfully, it was a risk that paid off, providing me with much-needed improvement for a pretty extended period.
The decompression surgery provided me with significant relief from 2019 until 2022. However, as time passed, my back pain gradually worsened, once again impacting my quality of life. At that point, we decided to proceed with an L4/L5 fusion. Decompression surgeries are often considered a way to buy time, especially for younger patients requiring multiple fusions. I was only 34 when I first learned I was ill, and the priority has always been to space out fusions as much as possible. This strategy preserves mobility in the affected joints and helps minimize complications later in life, as implants and hardware inevitably wear out over time. The goal is to delay that wear for as long as possible to avoid the need for additional surgeries later.
That being said, it's important to never delay surgery if a trusted doctor advises that it's the only viable option for relief. Thanks to both my decompression and earlier fusions, I was able to enjoy years of meaningful relief. I ultimately chose to proceed with the L4/L5 fusion in 2023 with my trusted surgeon because my condition had escalated. I was dealing with incontinence, significant pain, numbness, and weakness in both legs. On top of that, my right foot had almost no reflexes, and I frequently fell because my legs would unexpectedly give out.
These challenges made it clear that the fusion was necessary to regain stability and improve my overall quality of life. I'm grateful for the years of relief that the decompression and fusions provided and for the chance to take back some control over my health.
Surgery 6: L4/L5 Posterior Lumbar Interbody Fusion
On January 31st, 2023, I underwent an L4/L5 fusion. I was discharged from the hospital within 24 hours and felt surprisingly well during the first week or two of recovery. However, it soon became clear that something was seriously wrong. I was placed on bed rest for a suspected dural tear, and the experience was nothing short of excruciating. Imagine the worst headache you've ever had, combined with relentless nausea and vomiting whenever transitioning from lying down to sitting or standing—the pain was unbearable. We initially hoped my body would heal on its own, but instead, my condition continued to deteriorate.
On February 10th, 2023, my mom took me to the ER after finding me completely incoherent, running a fever, and in the worst pain of my life. Despite my symptoms and a white blood cell count of over 24,000, the ER doctor dismissed it as an inflammatory response to the surgery caused by my Ankylosing Spondylitis (AS). Against the protests of my family—who had to assist me into the car and back home—and even my spinal surgeon, who strongly advocated against my discharge, the hospital sent me home. Their reasoning? I didn’t meet the admission protocol. It’s ironic—getting an AS diagnosis is notoriously difficult, and yet once you have it, some doctors seem eager to blame every issue on the disease, regardless of evidence to the contrary.
My spinal surgeon, Dr. Philip G. Ploska of Regenerative Orthopaedics and Spine Institute, is located 50 miles away from where I currently live. Because of the distance, we initially tried to avoid returning to his surgery center, hoping my condition might improve on its own. This decision was mutual, and I want to emphasize that my surgeon was in constant communication with my mom and me throughout this time. He was deeply involved in my care, tirelessly working to find the best solution for what was happening. Unfortunately, my health only continued to decline.
Ultimately, my surgeon determined that additional intervention was necessary. We scheduled a follow-up surgery for February 16th, 2023, to address the complications and allow him to figure out what exactly was going on.
Surgery 7: L4/L5 post-op Emergency Surgery and L3/L4 Decompression 02/17/2023
On February 16th, 2023, I arrived at the surgery center around 1:30 p.m. in an alarmingly critical condition. My blood pressure had plummeted to 60/40, I was tachycardic, and I was in acute kidney failure (determined by bloodwork later on). By the time my surgeon began operating, it was confirmed that I was in septic shock.
My condition was so severe that I was immediately transferred via ambulance—just two blocks—to the hospital.
I want to extend my deepest gratitude to the incredible team at Henry County Fire and EMS House 8 in Georgia. They stayed by my side the entire time while we waited for a hospital room, which took quite a while. Their exceptional care is a big reason I am still here today to share this story.
The following day, February 17th, 2023, I underwent my 7th spinal surgery once they had stabilized me enough for the procedure. In an incredible twist of fate, this surgery took place exactly eight years to the day of my very first spinal fusion on February 17th, 2015. This operation and the ensuing recovery would prove to be the most difficult challenge I have ever faced—and ultimately overcome.
The cause of my condition turned out to be a rare bacterial infection called Serratia marcescens, an opportunistic nosocomial pathogen I had contracted most likely in the hospital somewhere during my 6th spinal surgery. While infections like this are rare, my underlying health conditions—Ankylosing Spondylitis (AS) and type 2 diabetes—made me more vulnerable.
The 7th surgery was necessary not only to address the infection but also to completely redo the spinal fusion and remove all infected tissue and fluid. Additionally, the infection had spread to my L3/L4, which required decompression during this surgery due to severe narrowing caused by bone growth and arthritis.
I remained in the hospital for eight days as the medical team worked to find an antibiotic that could effectively treat both the blood infection and the tissue infection. According to my infectious disease doctor, this was highly unusual as each cultured back to different antibiotics. Ultimately, I was prescribed Levaquin, which, despite its well-documented adverse effects on joints, ligaments, and tendons, was the only antibiotic capable of addressing both infections simultaneously without the need for a PICC line. I was on Levaquin for a grueling 38 days straight.
To give me the best chance of recovery, the surgical team also decided to place a wound vac during the procedure. While wound vacs are not typically necessary for most patients, it was an essential part of my care plan to maximize my odds of healing successfully.
I spent a total of 12 weeks on strict bed rest, lying at a 30-degree angle, except during meals when I was allowed to sit up to 45 degrees. After so much time flat on my back, I essentially had to relearn how to walk, as the prolonged inactivity had caused severe muscle atrophy in my legs. The first time I stood up using my walker, my entire body trembled uncontrollably from weakness. I managed to take just two small steps that day, but it was a pivotal moment for me. I promised myself that I would never again take the ability to walk for granted.
From that day forward, I committed to moving my body every single day. Now, I run at least 6.25 miles daily and am preparing to jog my first 10K road race in July 2024. This race is particularly meaningful to me—it was the one I originally registered for ten years ago, just before I got sick and couldn’t complete it. Achieving this has been a long-held dream and a major bucket list item for me.
Since embracing consistent movement after my last surgery, I’ve been able to shed 107 pounds, and I feel better than I have in years. I’ve truly come to believe that movement is medicine, and it’s been transformative for both my body and my spirit.
UPDATE: I did it and then some, now I am training for my first marathon that I will run on March 1st, 2026, another one of my bucket list items!
I share this not to alarm you but to inspire hope. Despite every obstacle stacked against me, I have emerged from my spinal surgeries with a truly successful outcome and am now thriving—even with the challenges of Ankylosing Spondylitis (AS). I place absolute trust in my spinal surgeon, knowing that every procedure he recommends is justified and will work if I approach it with the right mindset. Our minds are incredibly powerful tools and play a monumental role in recovery from surgery, illness, or any challenge life throws our way!!
My unwavering faith in myself and my spinal surgeon has never let me down—and I don't believe it ever will. Together, we’ve built an amazing partnership, one that I value deeply. He’s not just my spinal surgeon; he feels like part of my family. The same goes for my entire care team, including his nurse practitioner, the incredible nurses, and the other doctors who’ve supported me every step of the way.
Recovering from spinal surgery is no easy feat—it’s grueling and takes immense perseverance. But it’s absolutely 100% possible if you keep moving forward, one step at a time, always striving to take one more step than you did yesterday. Progress, no matter how small, leads to healing and strength!!
When I first became ill, I had to make the heartbreaking decision to leave my career as a special education teacher. I was devastated, but my care team and I made the tough call that, unless necessary, I shouldn’t work due to the challenges of living with multiple degenerative diseases Ankylosing Spondylitis (AS), Degenerative Disc Disease (DDD), and Osteoarthritis.
Although I haven’t worked since then, I’ve poured my energy into meaningful pursuits. I volunteer regularly, write this blog to share my medical journey, and have learned to enjoy almost anything I want—within reason and for short periods.
Most excitingly, I’ve recently begun collaborating with my spinal surgeon and others to share my story and connect with people like you and me. Choosing not to work was a decision rooted in preserving my quality of life for the long haul, ensuring I’d have the best possible health in the years to come. I’m incredibly fortunate to have an amazing support system that’s made this possible.
Though my life looks different than I once envisioned, it’s beautiful and fulfilling in ways I could never have imagined. Yes, this disease has taken things from me, but I would even dare to say it’s given me more. It’s taught me to cherish life deeply, to leave a legacy of helping others, and to truly fight for what matters.
There’s something profoundly meaningful about realizing that life becomes richer when you fight with everything you’ve got—and when you’re surrounded by people who care enough to fight alongside you every step of the way.
To me, this is simply my story of surviving and thriving despite a disease that undeniably sucks. But for others, I hope it’s a story of hope. That thought alone brings me so much joy. During this time of struggle, countless things that could’ve broken me—especially with stress as a major trigger for my flares—were happening in my life, yet they didn’t. I firmly believe it’s because of the unwavering love and support of my care team, friends, and family and my unshakable faith in God. If my story could help even one person, I’d go through it all again without hesitation.
Sharing my experiences hasn’t just helped others—it’s helped me. It’s been a gift to rediscover myself and experience a major “glow-up,” thanks to my incredible spinal surgeon and his team. They helped me build an amazing care team and took someone who was physically and emotionally shattered beyond belief and turned them into something resilient and beautiful—someone who can now extend that hope to others.
And if I could offer just one piece of advice, it would be this: Always eat the ice cream. Life is too short. Go out and live the best life you possibly can every single day. I don’t fear death anymore; I know it’s peaceful. What I fear is not living a life full of purpose, joy, and adventure! That’s the real challenge—to truly live.
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