The first time I injured my back, it was my first day back at work after a camping trip with my ex. The urgent care doctor said I’d likely pinched a nerve, prescribed me ibuprofen and rest, and sent me home with a note. The pain came and went for a couple weeks before disappearing and I eventually stopped thinking about it, especially after an MRI ordered by my primary care physician didn’t show anything abnormal.

It didn’t occur to me when I suddenly developed chronic hip pain during a cross-country move a few years later—or when I began using mobility aids in late 2021 due to chronic sciatica—that all of these instances were likely related. And after an epidural in April 2023 gave me my first painless days in years, I thought perhaps it was behind me.

I thought wrong. As my spine doctor warned me last year, the effects of the epidural eventually wore off, though it took longer than they predicted. In late February, the chronic lower back pain and severe hip and leg pain returned, my nerves like the brittle end of a candlewick after the flame was quenched. I called my doctor, asked for another epidural, and set up a physical therapy schedule. This epidural didn’t take, so we set up another.

But a week before the appointment, things took an unexpected turn. I woke into an incontinence episode that felt different from previous ones for three reasons: the strength and speed of the stream made it impossible to stop; my legs felt too weak to kick off my lightweight covers, let alone carry me to the bathroom without having to lean significantly on my cane; and I had a 100.2° fever. Combined, my partners and I chalked these symptoms up to a potential UTI, which I haven’t had since my hysterectomy last year. Rather than hear why I wanted to try to break my fever before hitting the ER, they insisted I go as soon as possible. I didn’t argue, and for that, I’m incredibly grateful.

I’m also incredibly grateful to the ER physician who, in addition to running a litany of tests for potential viruses and bacterial infections in my bladder and blood, also ordered an emergency MRI with contrast based on the then-current treatment plan for my back. He said he wanted to rule out a spinal infection and we thanked him for his due diligence. Too often, I’ve been ushered out the door at other hospitals for not presenting enough symptoms to “truly have something treatable.” Since my fever broke before I was triaged, I feared a similar thing happening this time. Luckily, it didn’t.

As he laid out his plan for my ER visit, the doctor suggested keeping me overnight for pain management and observation, which we agreed to out of an abundance of caution. He told me I’d hear from my spine doctor the next day about my MRI results, which also made sense. But the next morning when I woke to see my spine doctor and her assistant standing at the end of my bed at 7 a.m., I knew things had changed. An early visit from the surgical team never bodes well.

Rather than give me the name of my diagnosis, which I’ll get to in a moment, my surgeon said, “If we don’t operate today, you’ll have permanent damage.” Until this point, she had been determined to keep me out of the OR since I’m so young and back surgeries can sometimes be like opening Pandora’s Box. When you have family members with a history of back problems, which I do, that’s even truer.

With “permanent damage” ringing in my ears, I called my partners and relayed the information, then had my surgeon talk to all three of us with them on speakerphone. They arrived at the hospital a short time later and I went into surgery for a microdiscectomy later that afternoon.

What’s a microdiscectomy?

During a microdiscectomy, the surgeon makes a small incision in the patient’s skin over the spine, then removes part or all of a bulging or herniated disc to relieve pressure on the nerves.

I knew going into surgery that I had a herniated disc and that my latest MRI showed it had gotten significantly larger from an MRI taken in March. My surgeon said this was the only way to correct the problem before my incontinence and/or lower extremity weakness became permanent. She assured me most patients go home the same day and that I likely wouldn’t even need PT to recover. Because I have Cyclic Vomiting Syndrome and one of my major triggers is pain, we requested that I stay overnight for observation and pain management, but my partners and I expected I’d be discharged the next day.

I was, but my return home was short-lived.

Not outpatient for me

Unfortunately, a slight pain I felt in my left leg before leaving the hospital became so severe in the 12 hours after discharge that I could barely walk. We returned to the ER, where they repeated imaging (and saw there was already improvement, despite my pain) and re-admitted me for pain management. I remained in the hospital for two more nights and then was transferred to an inpatient rehabilitation clinic, where I stayed for 10 days.

In addition to 24-hour nurse care and pain management, I received 900 minutes of intensive occupational and physical therapy, split into 90-minute chunks per discipline across five days. I learned how to get dressed without violating my strict post-surgery precautions (no bending, lifting, or twisting for 10-12 weeks) and how to walk again with both a rollator and a cane. I did strengthening exercises for my shoulders, arms, upper back, lower back, and legs, and learned how to go up and down the stairs using a built-in rail on one side and my cane on the other. I went for walks that steadily increased in time and distance and discovered my limitations when it comes to low-intensity cardio following a CVS episode, something I hadn’t previously encountered.

My caseworker at the hospital fought hard to get me a bed at this facility and I will forever be grateful to them for that work. Although I was deeply homesick and missed my cats, my partners, and my life, inpatient rehabilitation was the absolute best thing for me.

My body is often slow to heal after surgery, no matter how invasive, and I frequently struggle with pain management because I’m medically complex. I also struggle with rare side effects more often than not, which can make recovery particularly hairy. I had no idea what to expect from this experience when I was told wheelchair transport would take me to the facility. Now that I’m on the other side, I can honestly say I wouldn’t be anywhere near as mobile as I am had I not been given that chance.

Cauda Equina Syndrome

In addition to working on my physical mobility, I’ve also had a lot of time to reflect on the surgery and its emergent nature since I went under the knife two weeks ago. When my surgeon told me I had to get surgery or face permanent damage, I believed her. But upon learning my actual diagnosis in my surgery notes, the truth of those words became even clearer. It wasn’t just that the disk herniation in my lower back had gotten bigger—I had developed Cauda Equina Syndrome.

According to the American Association of Neurological Surgeons, the cauda equina is “the collection of nerves at the end of the spinal cord,” so named because it resembles a horse’s tail. CES “occurs when there is dysfunction of multiple lumbar and sacral nerve roots of the cauda equina.” It most commonly results from a large herniated disc, as it did with me. However, I didn’t necessarily suffer an inciting incident, injury, or strain. Had I not gotten a rare fever two weeks ago, I can’t say for certain that I would’ve noticed anything had changed. My next epidural was only a week out, so I likely would’ve chalked up the strange incontinence and muscle weakness to the ongoing nature of my disc herniation.

From what I’ve read, that’s what makes CES so dangerous—it’s incredibly degenerative and it progresses fast. It can only be resolved through urgent or emergent surgery. Red flag symptoms include urinary retention, incontinence, “saddle anesthesia” or “saddle pain” (between the legs, where you’d feel strain from sitting on a saddle), weakness or paralysis in the lower extremities, sciatica, and sexual dysfunction. I’ve been dealing with variations of this list for years.

The AANS says, “Treating patients within 48 hours after the onset of the syndrome provides a significant advantage in improving sensory and motor deficits as well as urinary and rectal function. Even patients who undergo surgery after the 48-hour ideal time frame may experience improvement.”

As my stepdad phrased it when I called home during my inpatient rehabilitation, “You caught a lucky fucking break, kid.” I sure did.

What-ifs and what’s next

If I had argued with my partner about going to the ER or if the ER physician hadn’t opted for an MRI, this story would likely have had a very different ending. Instead of sitting at my desk, typing all of this from my desk chair, I could be sharing a fundraiser for a wheelchair or worse. It’s hard not to think about the what-ifs, especially since every medical provider I’ve spoken to since the surgery—including my outpatient and inpatient physical therapists—has reacted with horror and then relief. CES is a rare but incredibly dangerous, rapidly progressive, degenerative neurological syndrome with potentially devastating consequences.

One of my closest friends developed CES several months ago and her doctors strung her along for weeks before she finally got an MRI, which revealed extensive damage to her spinal cord—some of which she’s still dealing with now. I’m deeply angry on her behalf. No one should be turned away from emergency treatment when they are complaining of such severe pain that it’s impacting their ability to move at their baseline. My friend and I are similarly sized, and I’m intimately aware of how much harder her fight has been as a fat woman seeking care for back pain.

I’m privileged to have a great medical team and incredible advocates. I’m also privileged to be a white person with strong cognitive and verbal acuity. Although I’ve faced significant medical gaslighting and discrimination as a fat, disabled, visibly queer person, I’ve also had access to resources that have helped me learn how to demand the care I need even when doctors are reluctant to treat my actual symptoms. My partners are great at asking questions when I’m suffering from pain-induced brain fog and asking for more tests if the answers we’re getting don’t add up. I have a long list of specialists who help me manage several overlapping conditions and I qualify for Medicaid, which covers the vast majority of what I need as a patient.

Still, I’m struggling to wrap my head around how fast everything happened and how hard I’ve had to work since to make progress toward a more mobile and less painful future. I’m hopeful that I can reclaim some of my favorite pastimes that haven’t been accessible to me for years due to chronic pain. I’m also hopeful I can use what I’ve learned through this experience to help others advocate for themselves. I have at least 10 weeks left in my recovery, and what happens next will largely depend on how dedicated I am to maintaining a consistent movement routine and increasing my overall body strength and stamina.

Meanwhile, I intend to keep learning about care options for disabled people and how to create lasting change in systems that claim to help but often do more harm than good. I had a lot of people fighting tooth and nail to get me the proper treatment so I could get back on my feet as soon as possible without needing long-term, home-based care. For many, this is a necessity for quality of life, and the fact that they have to jump through so many hoops to get it is revolting. Disabled people deserve better.

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