Health & Safety Archives

Born Different, but Not Knowing Why

I was born into a body that was different from the beginning.

Clubfoot.
Left hip dysplasia.
Leg casts as an infant.

As an adolescent, I experienced severe growing pains, never realizing they might be connected to conditions that would take years to identify. Years passed. I lived life pain-free.

By 2006, I was in the best shape of my life after losing 100 pounds through exercise and a low-carb diet. On May 9, 2006, I donated a kidney to my husband, Martin, an act of love I will never regret. We just celebrated our 20-year kidney transplant anniversary this year.

At that time, I had not yet developed the debilitating symptoms of Chiari Malformation or Tethered Cord Syndrome (TCS). Then, in my 30s, everything changed.

2008: When the Symptoms Began

After riding a roller coaster in 2008, I immediately began experiencing symptoms that would eventually be associated with Chiari Malformation and TCS.

Brain imaging showed evidence of Chiari, but doctors didn’t interpret the findings in a way that led to answers. Because my cerebellar tonsillar herniation measured “only” 5 millimeters, doctors dismissed my symptoms as insignificant.

I knew something was wrong, but I struggled to get neurologists and neurosurgeons to take me seriously. Exhausted and frightened, I researched and advocated for myself until I finally found a specialist who understood.

Finding My Hero: Dr. John Oro

At 39, I found Dr. John Oro at the Colorado Chiari Institute. He diagnosed me with Chiari Malformation and Tethered Cord Syndrome.

My TCS symptoms were more severe than my Chiari symptoms at the time, so in 2009, Dr. Oro performed my first spinal cord detethering surgery. For the first time, I felt understood.

Five Years Later: The Tethered Cord Returned

Approximately five years later, my spinal cord retethered, and my symptoms returned worse than before.

I traveled back to Colorado, where Dr. Oro performed another detethering surgery that lasted about four and a half hours. Afterward, I was able to “manage” my Chiari and TCS symptoms for a year.

I hoped I could finally move forward, but my medical journey was far from over.

2016: The Crack in My Neck

In 2016, I heard and felt a crack in my neck. From that day forward, my Chiari symptoms became severe, and I began desperately seeking decompression surgery.

Dr. Oro had retired, so I had to find another specialist. Eventually, a UCLA neurosurgeon agreed to perform the procedure.

The six-hour surgery included cauterizing my cerebellar tonsils. Waking up was the most painful experience I had ever endured. I begged the medical staff to knock me out because the pain control was not working.

I eventually recovered, carrying the memory of that experience and 30 staples in my head. For approximately eight months, I felt some relief.

Then my symptoms returned.

The Clear Fluid: Discovering My Cranial CSF Leak

After those eight months, clear fluid began dripping from my nose, followed by horrific head pain. Local testing for a cranial cerebrospinal fluid (CSF) leak was negative.

Through my own research, I found Dr. Edward Hepworth in Colorado, a cranial ENT specialist who treats difficult-to-diagnose CSF leaks. After waiting eight months for an appointment, I traveled to Colorado and underwent a 48-hour hospital admission for a pledget study.

The leak was finally found.

In 2019, Dr. Hepworth repaired my cranial leak. During that same trip, I also had a hole in my heart closed.

Hypermobile Ehlers-Danlos Syndrome: Connecting My Issues

In 2021, I was finally diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), a connective tissue disorder affecting joints, ligaments, and other tissues.

I had suspected hEDS for years, but obtaining a diagnosis was extremely difficult. The diagnosis helped connect some of the many conditions I had experienced, including clubfoot, hip dysplasia, Chiari symptoms, TCS, and my cranial CSF leak.

Each diagnosis added clarity, but none erased the pain or the years I had spent fighting to be heard.

Eighteen Surgeries: Learning the Language of Hospitals

Over the years, I have undergone 18 surgeries.

I learned the smell of hospitals, the sound of monitors, the fear before anesthesia, and the vulnerability of waking up unsure what pain would come next. I also learned how to navigate medical care and advocate for myself.

For years, I thought brain surgery was the worst pain I would ever experience.

I was wrong.

2020: The Day I Was Floxed

In 2020, I was hospitalized for an infected cyst below my parotid gland. I received Ciprofloxacin followed by intravenous Levaquin (levofloxacin), both fluoroquinolone antibiotics, over two days.

The day I was discharged, my life changed.

Severe, systemic pain began almost immediately. It spread throughout my body, making every movement difficult. I could barely walk, couldn’t tolerate anyone touching my feet, and couldn’t wear shoes.

I had survived brain surgery and spinal cord surgeries, so I knew what pain and recovery felt like. This was different. Surgery has an ending, an incision that heals, and the hope of recovery. Being floxed became something I had to live inside.

I felt like a walking corpse. At times, the suffering was so overwhelming that I wanted to die.

A Year of Medical Trauma and Gaslighting

For the next year, I lived in severe pain without answers. Doctors referred me to behavioral health because they could not explain my physical symptoms.

Being unable to walk normally, tolerate touch, or wear shoes while feeling disbelieved caused profound emotional harm. The experience became medical PTSD.

Then I learned about Fluoroquinolone Associated Disability, commonly known as FQAD. For the first time, I found information that connected my symptoms to the antibiotics I had received.

I finally had a name for what I believed had happened to me.

Spending Our Savings to Find Relief

My husband and I spent $23,000 of our savings on a five-day IV treatment followed by stem cell therapy. We made that decision because I was suffering so severely and needed a chance at a better quality of life.

I believe those treatments helped keep me from ending up in a wheelchair, but they did not restore my former life.

I am disabled now and live with severe pain every day. The woman I was before 2020 is not the woman I am today, and I continue to grieve what I have lost while learning to live with my body as it is.

January 2026: Finally Having a Diagnosis

In January 2026, three months after the CDC approved a new ICD-10 diagnosis code for FQAD, I met with my primary care doctor to pursue official documentation of the long-term effects I had experienced after receiving fluoroquinolones.

My medical records now include: T36.AX5 — Adverse effect of Fluoroquinolone antibiotics, sequela (long-term effects).

After years of pain, confusion, and dismissal, I finally had validation, a diagnosis, and a name for what happened to me. 💜

This documentation does not erase my pain or restore my former life, but it matters. I wish I had known about the potential risks before receiving those medications. I wish I had been warned that serious, prolonged, and disabling reactions were possible.

I cannot change what happened, but I can tell my story.

What Fluoroquinolones Did to My Right Foot

My right foot has become a visible reminder of the physical suffering I have experienced since receiving fluoroquinolones.

I want people to understand that serious adverse drug reactions can extend far beyond a hospital stay. When symptoms begin suddenly and pain becomes disabling, people deserve to be listened to and taken seriously.

I cannot undo what happened to my body, but I can raise awareness about fluoroquinolone-associated disability and encourage others to learn about the potential risks of these medications and seek medical care if concerning symptoms develop.

Many people are suffering, searching for answers, and struggling to be believed.

I am a daughter, a wife, a mother, a nana, and a woman who has survived experiences I never imagined facing.

I am more than my diagnoses, my surgeries, and the pain I live with.

If sharing helps someone find answers or feel understood, I will keep sharing.

Because after everything I have endured, I still have a voice, and I intend to use it!

*I dedicate this story to my family, my greatest blessings and my strongest support system throughout this difficult journey. To my husband, Martin, and our three beautiful daughters: Thank you for loving me through the pain, the tears, and the setbacks. Thank you for standing beside me, holding me up when I felt like I was falling apart, and loving me through the long haul. I am forever grateful for each of you. To Mom and Dad, and to my Wolf Pack, thank you for being part of my journey and for the love, strength, and support you have given me along the way. To Dr. Mark Ghalili, who saved my life. And to my fellow Floxies and everyone suffering from Fluoroquinolone Toxicity: this story is for you, too. For those living with invisible pain, grieving the lives they once knew, fighting to be believed, and finding the strength to keep going. You are not alone. Your pain matters, your story matters, and your voice deserves to be heard.

To read more on the safety issues surrounding fluoroquinolones, check out our article: “When “Safe and Effective” Fails: Fluoroquinolones and the Erosion of Public Trust.”

For decades, patients seeking medical care trusted a simple, foundational principle of medicine: First, do no harm. When a doctor handed down a prescription, patients assumed the medication had been thoroughly vetted for safety. Adverse reactions were presented as statistically negligible cases—unintended side effects in the march of modern medical progress.

Yet for millions of patients, especially those living with connective tissue disorders like Hypermobile Ehlers-Danlos Syndrome (hEDS) or Chiari Malformation, that trust has been shattered.

The history of fluoroquinolone antibiotics stands as a stark case study in institutional failure. Marketed for decades as routine frontline treatments, these powerful drugs were later retroactively hit with severe Black Box warnings. This story reveals a deeper crisis: the ongoing breakdown of public faith in corporate medicine.

The Rise of Fluoroquinolones: Profit Over Caution

Introduced widely in the 1980s and 1990s, fluoroquinolones were hailed as broad-spectrum miracle drugs. The class includes well-known medications like Ciprofloxacin (Cipro), Levofloxacin (Levaquin), and Moxifloxacin (Avelox). They were fast-acting, effective, and convenient.

Driven by aggressive pharmaceutical marketing, doctors routinely prescribed them for minor, uncomplicated issues: sinus infections, mild UTIs, bronchitis, and ear infections. Millions of prescriptions were written every year.

Behind the scenes, however, a troubling reality emerged. Early clinical trials—often funded and designed by the drug manufacturers themselves—were never structured to catch delayed, long-term, or multi-systemic damage. As these drugs dominated the market, reports of life-altering side effects began piling up in patient communities around the world.

A History of Withdrawals and Delayed Warnings

For years, regulatory agencies insisted that severe reactions were statistically negligible. Yet the safety history of fluoroquinolones tells a different story—one marked by sudden market withdrawals and late, reactive warnings.

Decades to Acknowledge the Damage

Decades of fierce patient advocacy, ruined lives, and overwhelming real-world evidence were needed for the FDA to intervene. Between 2008 and 2018, the agency issued a series of increasingly severe Black Box warnings—the strongest safety alert short of a total ban:

2008: Warning added for an increased risk of severe tendinitis and tendon rupture.

2013: Warning updated to explicitly state that nerve damage (peripheral neuropathy) can happen rapidly and become permanent.

2016: The FDA stated that for simple infections (like sinus or mild bladder infections), the risks of fluoroquinolones outweigh the benefits, advising doctors to use them strictly as a last resort.

2018: Warning issued specifically for high-risk populations—including individuals with Ehlers-Danlos Syndrome, hypermobility, or aortic aneurysms—due to the risk of aortic tears, tissue breakdown, and permanent disability.

The Hidden Peril for hEDS and Chiari Patients

For patients living with Hypermobile Ehlers-Danlos Syndrome (hEDS) or structural conditions like Chiari Malformation, these delayed warnings came at a devastating cost.

hEDS is a connective tissue disorder caused by defective collagen. Collagen is the physical scaffolding that holds together tendons, ligaments, blood vessels, and fascia throughout the body.

Fluoroquinolones interfere with collagen production and break down connective tissue. Giving a collagen-degrading antibiotic to a person whose body already struggles with fragile collagen is a dangerous combination. The result is often Fluoroquinolone-Associated Disability (FQAD)—a severe syndrome marked by widespread joint damage, tendon tears, burning nerve pain, and profound loss of mobility.

To make matters worse, patients who experienced these sudden post-antibiotic breakdowns were routinely dismissed. Because standard bloodwork and imaging rarely catch subtle cellular damage, patients were gaslit, told their symptoms were “just anxiety,” or referred to mental health providers. They were left to suffer both physical destruction and severe medical trauma.

How Medical Hegemony Shattered Public Trust

The tragedy of fluoroquinolones is not an isolated mistake or a single company’s oversight. It reveals a repeating pattern within modern healthcare:

Declarations of Safety: A pharmaceutical product is launched, backed by industry-sponsored trials, and declared safe and necessary for broad populations.
Suppression of Early Warnings: Patients and independent clinicians who raise early alarms about side effects are ignored, dismissed as “anecdotal,” or accused of spreading misinformation.
A Slow, Reluctant Retreat: Years or decades later—after thousands of lives have been disrupted—institutions quietly update labels, attach Black Box warnings, or pull drugs off shelves, rarely acknowledging the damage done.
The Informed Consent Loophole: Even after Black Box warnings are issued, doctors are not legally required to verbally inform patients of these warnings before handing down a prescription. Patients are left to discover the risks on their own—often only after irreversible harm has already occurred.

When public health institutions demand uncritical trust while enforcing rigid corporate consensus, they destroy the foundation of real science: open debate, continuous reassessment, and listening to patient outcomes.

When guidance shifts from “safe and routine” to “risk of permanent disability”—and patients are kept in the dark at the exam table—public skepticism is not irrational. It is a logical tool for self-preservation. Patients can no longer afford to blindly trust institutions or providers that prioritize commercial convenience over genuine patient safety.

What You Can Do to Protect Yourself

If you or a loved one live with hEDS, hypermobility, or any connective tissue disorder:

Always Disclose Your Diagnosis: Make sure every doctor, surgeon, and pharmacist knows you have a connective tissue condition before you accept any new prescription.

Ask for Alternatives: Unless you face a life-threatening infection with no other option, request a safer, non-fluoroquinolone antibiotic.

Listen to Your Body: If a medication causes sudden, burning nerve pain, joint stiffness, or extreme weakness, seek medical evaluation immediately and advocate for your safety.

Science is an ongoing process of testing, learning, and refining—not an unquestionable doctrine. By speaking up, sharing real experiences, and demanding accountability, patients are leading the way toward a safer medical system.

Real progress in medicine will not come from top-down decrees or silencing debate. It comes from empowered patients, transparent science, and true informed consent.

Surviving Chiari Malformation, tethered cord syndrome, and FQAD taught Michelle Nieves that staying silent is not an option. Her journey exposes why independent advocacy like Chiari Bridges is indispensable—it pushes back against dogmatic diagnostic criteria, shines a light on undocumented drug toxicities, and demands that medical institutions prioritize real-world patient outcomes over corporate consensus. Read her story, “The Michelle Nieves Story – Reclaiming My Voice: hEDS, Chiari, and the Hidden Dangers of Fluoroquinolones.”

The Michelle Nieves Story – Reclaiming My Voice: hEDS, Chiari, and the Hidden Dangers of Fluoroquinolones