From Life-Saving Surgery to Lifelong Consequences: My Fight for Answers

By Frankie
Disabled Air Force Veteran | Chronic Illness Advocate | Medical Nerd

“I never imagined the treatment that saved my life would take so much from me.”

If you’re here, maybe you’ve been where I’ve been — sitting across from doctors who once saved your life but now can’t explain what’s happening to your body. Maybe you’ve searched for answers in medical portals, scrolled through research articles at 2 a.m., or wondered if anyone would ever believe you again.

This is my story — of survival, loss, and a slow, painful rebirth into a life I never expected to live.

The Diagnosis That Changed Everything

In December 2018, I was diagnosed with a cerebral arteriovenous malformation (AVM) — a rare, tangled web of blood vessels deep in my brain. At the time, I was an active-duty medic in the United States Air Force, thriving in a high-pressure environment where precision and strength were part of my daily life.

When the diagnosis came, it felt like a betrayal by my own body.

I wasn’t the patient — I was the healer, the one others turned to in crisis.

My AVM was too large for open surgery, and on January 31, 2019, I underwent Gamma Knife stereotactic radiosurgery, a targeted form of brain radiation designed to destroy the AVM over time. The doctors were confident. I was told it was safe — precise, effective, controlled.

And it was. Gamma Knife saved my life.

But no one warned me about what else it might take. 

“I went from fighting for the lives of others to fighting for my own.”

Within a week, I developed bilateral pulmonary emboli — blood clots in both lungs — triggered by my oral contraception. I survived that too, but my recovery was complicated and frightening.

A year later, my lungs failed me again. After months of shortness of breath and fatigue, I underwent a bronchoscopy and mediastinoscopy. The diagnosis: pulmonary sarcoidosis, a rare autoimmune disease that attacks the lungs and lymph nodes.

I was exhausted — but hopeful. I thought maybe this was just part of the healing process.

I was wrong. 

When the World Went Silent

In September 2019, while hunting, I suddenly lost hearing in my left ear. One moment, I was aware of the world — the sound of my breath, my heartbeat and the frost crunching under my boots — and the next, there was silence. I was hiking the rolling hills of eastern Montana chasing antelope with my husband when suddenly there was a high pitched ringing in my left ear followed by that muffled hearing you get after firing a rifle without hearing protection. Except, my hearing never came back…

Eventually, I lost hearing in my right ear too and now I wear hearing aids to accommodate for some of my hearing difficulties.

Doctors couldn’t explain it. They called it idiopathic (no known cause) sudden sensorineural hearing loss, and every test came back inconclusive (allegedly). Actually, initially it was blamed on an extremely rare complication of sarcoidosis, neurosarcoidosis, or sarcoidosis. of the nervous system which can cause sensorineural hearing loss. This didn’t make sense though because my MRIs were not consistent with neurosarcoidosis.

With my medial background I naturally began doing my own research. That’s when I discovered studies linking Gamma Knife radiation to hearing loss and even scarier, cognitive impairment depending on which brain regions were affected. Before ever experiencing cognitive decline I reached out to my neurosurgeon and radiation oncologist through my MyChart portal messaging in December 2019, asking if my hearing loss could be related to my gamma knife surgery, looking for validation of what I already knew to be true.

They didn’t reply in writing. They called instead. I remember the words clearly — “That’s not possible.” My husband remembers the conversation too too.

But I knew something was happening inside my brain.

“It felt like my mind was slipping away, piece by piece.”

By 2021, my cognitive began impacting my life and I didn’t even realize it.

I forgot tasks, misplaced simple information, showed up wrong place wrong time, lost my train of thought mid-sentence.

I had always been sharp — the Air Force medic who thrived under pressure — and suddenly, I couldn’t function. I lost my job as a clinical receptionist, something that had once come naturally to me and theoretically should be super easy given my past profession. It devastated me, embarrassed me, brought about shame and deep unsettling fear for my future.

I wasn’t lazy. I wasn’t unfocused.

I had a brain injury — and no one believed me. 

The Diagnoses That Finally Named My Reality

In 2022, I underwent a comprehensive neuropsychiatric evaluation. The results were both validating and devastating:

• Major Neurocognitive Disorder

• Autism Spectrum Disorder

• ADHD

• Non-Verbal Learning Disorder

• Math Disability

During that same evaluation, the doctor asked a simple question that changed everything:

“Are you flexible?”

I showed him — the bendy joints, the stretchy skin I’d always joked about as a kid. His eyes widened. That led to a referral and, finally, a diagnosis of Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder that explained my whole life — my chronic pain, neurodiversity, fatigue, and joint instability. 

“Everything finally had a name — but no one had warned me any of this could happen and even worse they wouldn’t admit it could have happened.”

By 2023, a new MRI confirmed what I already felt: stable but permanent brain damage — areas of encephalomalacia and gliosis, meaning my brain tissue had been injured and scarred. It was described as a “chronic treatment effect.”

The damage is stable.

But it’s irreversible.

In June 2024, after years of monitoring, my AVM had finally shrunk enough to be surgically removed. The resection was successful, but I temporarily lost left-sided vision, which slowly returned after months of recovery as well as more white matter brain damage.

It felt like every victory came with a loss, although I'd do it all over again, to save my life.

Living With the Aftermath

Today, my daily life is a careful balancing act.

I live with permanent cognitive and sensory deficits — and a long list of conditions tied to Ehlers-Danlos Syndrome, including:

• POTS (Postural Orthostatic Tachycardia Syndrome)

• MCAS (Mast Cell Activation Syndrome)

• Chronic dehydration and hypotension

• Gastroparesis and unintentional weight loss

• Chronic pain, fatigue, and insomnia

• Spinal instability with bulging discs and synovial cysts

“Every day is survival disguised as routine.”

I rely on structure and technology to function:

AI tools to help me write and remember,

Shared calendars, reminder apps and detailed notes track my days an responsibilities,

and the unwavering support of my husband and mother to help me stay on track and accomplish what I need to day to day.

I undergo IV hydration therapy multiple times a week to manage chronic dehydration, POTS and hypotension.

I carefully monitor my diet and weight just to maintain enough stability to take my ADHD medication safely.

Every aspect of my existence is managed, measured, and monitored.

The Fight for Answers

I have spent years researching, documenting, and trying to understand how my brain — the same one I once trusted to heal and care for others — became the source of my greatest challenges.

When I reached out in 2019, I wasn’t looking to blame anyone. I was scared. I just wanted to understand.

But my questions were dismissed and I was denied timely and thorough diagnosis, treatment and resources that could have made the transition from able to disabled a lot less traumatic. I was made to feel it was “all in my head”, that I was creating stories.

Now, after years of rehabilitation following the triggering of my chronic illnesses, I’m finally strong enough. mentally and physically to ask again and to fight for the truth.

In November 2025, I’ll meet with a neurologist who is willing to review my MRIs and explore the possible connection between my Gamma Knife treatment and my neurological and sensory disabilities.

It will be the first time any doctor has truly taken my concerns seriously.

“Healing doesn’t just mean surviving — it means being heard.”

I’m not seeking sympathy — I’m seeking truth and understanding.

Because I believe every patient deserves to know the full range of possible outcomes before consenting to treatment as well as what their resources are for recovery, support and accommodation if the unthinkable were to happen.

I believe every medical record should reflect a patient’s communication attempts, even when the answers are uncomfortable or are the result of care that was meant to save their life.

And I believe that “rare complications” should still be discussed — not dismissed.

What I Want Every Patient to Know

If you’ve ever been dismissed, told “it’s not possible,” or made to feel like your pain is an inconvenience — please hear me: you are not alone.

Document everything.

Ask questions, even when it makes people uncomfortable.

Request copies of your imaging, lab work, and communications.

And if your instincts tell you something is wrong — trust them.

Because you are the one living in your body.

You are the one carrying its history.

“I am not broken — I am disabled. And I am still here.”

I am forever grateful for the surgery that saved my life. But I wish I had been told the whole story — the possibilities, the risks, and the lifelong adjustments that might follow.

I’ve had to grieve the person I was — the Air Force medic, the quick thinker, the multitasker.

Now, I am someone new: slower, softer, but stronger in ways I never expected.

This is my story — not of loss, but of reclamation.

Of finding strength in limitation.

Of turning silence into testimony.

And if you’ve made it this far, please know — your story matters too.

💬 Follow My Journey

If this story resonates with you — if you’ve lived through medical trauma, chronic illness, or the invisible fight to be believed — I invite you to walk this path with me.

You can follow my journey and advocacy work on Facebook and Instagram, where I share updates, insights, and reflections on life after survival.

➡️ @thechronicallyresilient

And as always, Stay Resilient ❤️‍🩹

Becoming My Own Chronic Disease Manager: How a Gamma Knife, Pulmonary Embolisms, and a Rare Autoimmune Disease changed everything

By Frankie
Disabled Air Force Veteran | Chronic Illness Advocate | Medical Nerd

Understanding Sarcoidosis — A Rare and Misunderstood Disease

Sarcoidosis is one of those conditions that sounds simple when you first read about it — and yet the more you learn, the more mysterious it really is. It’s a rare autoimmune disease that causes the body to form tiny clumps of inflammatory cells called granulomas in various organs. These granulomas can appear anywhere — most commonly in the lungs, lymph nodes, skin, or eyes — and they can either quietly exist without causing problems or slowly interfere with how those organs function.

What makes sarcoidosis so complex is that no one knows exactly why it happens. It’s believed to be triggered by an abnormal immune response, possibly due to genetics or environmental factors, but there’s no single cause and no single pattern. For some, it’s mild and temporary. For others, it’s chronic, progressive, and life-altering.

Pulmonary sarcoidosis — when it affects the lungs — can cause symptoms like persistent cough, shortness of breath, and fatigue. But sarcoidosis is notorious for masquerading as other diagnoses, because its symptoms are often nonspecific and atypical. Fatigue, shortness of breath, joint pain, rashes, and neurological changes can all be explained by a dozen other conditions. That’s why it often goes undiagnosed for months or years, or is discovered incidentally during imaging for something else entirely.

For me, sarcoidosis entered my story not as a diagnosis I was searching for, but as a hidden thread running through a series of medical crises, ultimately revealing itself after careful observation and follow-up. I wholeheartedly believe that my Gamma Knife radiation surgery on January 31, 2019, acted as a trigger that set in motion a cascade of conditions — from my pulmonary embolisms to sarcoidosis and my hearing loss — amplified or exacerbated by my environmental factors and underlying vulnerabilities.

My Unexpected Diagnosis — When a CT Scan Changed Everything

On January 31, 2019, I had Gamma Knife radiation to treat my arteriovenous malformation — a tangled cluster of blood vessels in my brain that I had lived with for years. It was supposed to be a precise solution to a known problem. But just five days later, on February 5th, I was in the hospital again — this time fighting for my life after developing bilateral pulmonary embolisms. Blood clots had lodged themselves in both of my lungs.

The CT scan that confirmed the embolisms did more than identify the clots. It also revealed something unexpected: bilateral hilar lymphadenopathy — enlarged lymph nodes near the lungs — which raised concerns for pulmonary sarcoidosis. At that time, I was asymptomatic, and with the immediate crisis being my pulmonary embolisms, the finding was labeled “incidental.”

Even then, my instincts kicked in. My background as an Air Force medic gave me a strong understanding of anatomy and pathophysiology, and my autistic special interests — deep dives into research and medicine — had always driven me to dig deeper, to connect dots that others might overlook. I didn’t know it yet, but those instincts would soon become my lifeline.

Because of blood clotting risks, I had to switch from my regular birth control pills to the mini pill — and by July 2019, I was unexpectedly pregnant with our third child. The pregnancy paused everything: no imaging, no biopsies, no follow-up on the incidental CT finding. So I focused on staying healthy and managing my other conditions, knowing that the mystery of the lymph nodes would have to wait.

When I delivered in March 2020, we were discharged from the hospital just one day before the world shut down due to COVID-19. I came home, exhausted and adjusting to life with a newborn — only to develop hospital-acquired pneumonia. Once that cleared, my cough didn’t go away. It lingered and grew worse over time, accompanied by shortness of breath and overwhelming fatigue.

By May 2020, after follow-up imaging, surgical biopsy and evaluation, I was officially diagnosed with pulmonary sarcoidosis. At first, I thought the diagnosis might be another layer of confusion or frustration — another rare condition to navigate. But in reality, it was the beginning of a chapter that would teach me the depth of resilience, self-advocacy, and patience.

Living With Pulmonary Sarcoidosis — The Slow Loss of Air

After our youngest son was born, my body didn’t bounce back the way I expected. Fatigue hit me in waves I hadn’t known were possible. Walking up a flight of stairs left me breathless. Simple exertion became an ordeal. My body, once strong and capable from years of military service and outdoor adventure, now betrayed me in ways I had never imagined.

Hunting trips that had been a source of joy and connection became grueling tests of endurance. I remember one trip in particular — early mornings, scanning the horizon for antelope with my husband. By mid-morning, I was so air-hungry I felt like I might pass out. No matter how deeply I breathed, it wasn’t enough. I had to retreat to the hotel afterward, sleeping until the next day just to recover enough to try again. Some mornings I couldn’t go at all, and on other days I could only hunt in the afternoon.

It was during our last hunting trip in September 2021 that another challenge struck. One moment, I was listening to music and scanning the landscape, and the next, my left ear went suddenly muffled — like the ringing and muffled sensation after a firearm discharge, but there was no firearm discharge and this time there was no relief. My hearing never fully returned.

I immediately did a deep dive into research. I discovered that Gamma Knife radiation can, in rare cases, cause hearing loss. I reached out to the neurosurgeon and radiation oncologist who had performed the procedure and presented my findings. They denied that the surgery could have caused my hearing loss and effectively sent me in the wrong direction.

With surgery ruled out as a likely cause, I moved on to the next possibility: sarcoidosis. But for sarcoidosis to affect hearing, it would have to be neurosarcoidosis, which is far rarer than pulmonary sarcoidosis — essentially highly unlikely. Because there were no visible brain lesions, a biopsy wasn’t possible, leaving my doctors without a clear explanation. Eventually, my sarcoidosis specialists at UCSF diagnosed me with neurosarcoidosis, which led to steroid IV infusions and low dose chemotherapy IV infusions. These infusions temporarily improved my hearing, suggesting that something rheumatological may indeed be affecting my auditory system — though ultimately some of the treatments ended up being unnecessary.

Sarcoidosis’s ability to masquerade as other conditions made this journey even more complex — each symptom could have been explained by something else entirely, which meant I had to rely on meticulous observation, research, and self-advocacy to understand what was really happening in my body.

Around the same time, I was also on prednisone to treat sarcoidosis, which caused rapid weight gain and the classic “moon face,” and I had begun methotrexate, a low-dose chemotherapy medication meant to control inflammation. The combination was brutal. Fatigue became nearly constant. Appetite vanished. Nausea was a daily companion. Within a year of my son’s birthday, I looked at family photos and barely recognized myself — my body had changed despite my efforts to eat well and remain active.

Every day became a balancing act: managing treatment side effects, navigating breathlessness, keeping up with my children, and trying to maintain the life I had known before illness took hold. And yet, even in the fatigue, pain, and frustration, I learned something vital: I was the person who could connect the dots, advocate for myself, and push forward when medical systems couldn’t fully see the whole picture.

Becoming My Own Chronic Disease Manager

Living with multiple rare and overlapping conditions taught me something vital: in many ways, no one else will see your body the way you do. I quickly became my own advocate, researcher, and sometimes even savior.

I have a primary care provider through the VA who is supportive, but in practice, my care often depends on my initiative. I request referrals, track labs, notice urgent changes, and ensure nothing critical slips through the cracks. I see an Ehlers-Danlos Syndrome (EDS) specialist who oversees my treatment for chronic pain, MCAS, POTS, and hypotension, but I am the one doing the detailed research on my conditions. I come to appointments armed with notes, questions, and observations — often including things that had been missed or overlooked.

My experience as an Air Force medic has been invaluable. It trained me to understand anatomy, physiology, and pathology in a way that most patients never do. Coupled with my autistic special interests — deep, focused study of research and medicine — I can comprehend complex, overlapping conditions and anticipate complications. That combination has quite literally saved my life more than once: from noticing patterns that led to early intervention with my AVM and pulmonary embolisms to advocating for treatments for sarcoidosis before it could cause irreversible damage.

Becoming my own chronic disease manager isn’t just about knowledge. It’s about resilience, persistence, and self-trust. It’s about keeping going when the medical system doesn’t have all the answers, when tests are delayed, and when treatments come with burdensome side effects. Even in the hardest moments — when breathlessness, fatigue, hearing loss, and medication side effects threatened to define my life — I learned that understanding my own body and advocating for it was empowering.

In my view, the Gamma Knife surgery may have been the spark that triggered this cascade of overlapping conditions — a complex interplay of genetics, immune responses, and environmental factors. Recognizing that possibility helped me connect the dots and pursue the most appropriate care, even when conventional medicine offered no clear explanation.

Reflection — What I’ve Learned From My Body

Living through rare and overlapping conditions has taught me lessons no textbook could ever convey. My body has been unpredictable, challenging, and at times frightening. It has pushed me to my limits, forced me to confront vulnerability, and revealed the fragility of life in ways I never anticipated.

And yet, it has also shown me strength — not the kind measured by stamina or endurance alone, but the quiet, persistent kind that comes from knowing your body intimately, trusting your instincts, and advocating fiercely when the system falls short. I have learned that knowledge is power, that research and observation are tools of survival, and that the most effective medicine is often a combination of self-awareness, preparation, and courage.

Sarcoidosis is no joke. Pulmonary sarcoidosis can be life-altering, even life-threatening, and living through its symptoms taught me how quickly health can shift and how crucial timely intervention is. But today, I am profoundly grateful: my sarcoidosis is in remission, my lungs are symptom-free, and I can breathe without limitation — a gift I no longer take for granted.

I have also learned to embrace the unpredictability. My journey — from Gamma Knife surgery to pulmonary embolisms, from an incidental sarcoidosis finding to post-pregnancy chronic illness, from hunting trips that tested every breath to sudden hearing loss — has shown me that life can change in an instant, but so can resilience. Each challenge has shaped me, taught me to adapt, and revealed strengths I didn’t know I had.

Ultimately, this journey is about more than disease. It’s about trust: trust in my own knowledge, my own body, and my capacity to navigate complexity when no one else can. It’s about finding empowerment in the face of uncertainty, and about realizing that even when life becomes unpredictable and exhausting, we can still find ways to live fully, learn deeply, and move forward with hope.

I am no longer just a patient; I am a chronic disease manager, a researcher, an advocate, and a survivor. Through every setback, every unexpected diagnosis, and every day of fatigue and breathlessness, I have discovered that resilience isn’t about returning to who you were — it’s about learning to thrive in the body and the life you have today.

Follow me on YouTube, Facebook, and Instagram for an inside look at my journey navigating rare and complex health conditions, sharing insights from my research and experiences, and connecting with a community that understands the challenges of chronic illness. Join me for personal stories, tips, advocacy, and moments of resilience — and be part of a space where curiosity, knowledge, and support meet.

And as always, Stay Resilient ❤️‍🩹

My Brain Tried to Kill Me: Surviving a Cerebral AVM

By Frankie
Disabled Air Force Veteran | Chronic Illness Advocate | Medical Nerd

Hi, I’m Frankie. I’m a 33-year-old disabled Air Force veteran, and I want to tell you about when I learned I had a cerebral arteriovenous malformation (AVM) — and how it almost killed me before I even knew it was there.

This blog is part of my effort to chronicle my medical history in an honest and empowering way — not just for me, but for anyone living with a complex or rare condition. This is my AVM story, and it starts with a whisper in my ear.

What Is a Cerebral AVM?

A cerebral arteriovenous malformation (AVM) is a rare and potentially life-threatening condition where blood vessels in the brain form an abnormal connection between arteries and veins, bypassing capillaries. This creates a tangle of fragile vessels prone to rupture.

• Occurs in about 0.05% of the population

• Can lead to hemorrhagic stroke if ruptured

• Often goes undetected until it bleeds

In my case, I was lucky. My AVM was found before it ruptured — but only because I trusted my instincts and had a provider who listened.

Early Symptoms: When Something Feels Off

In 2018, I started noticing subtle but unusual symptoms:

• Pulsatile tinnitus in my right ear (a whooshing sound in rhythm with my heartbeat)

• Dizziness and episodes of vertigo

• A strange sense that something neurologically wasn’t quite right

These symptoms weren’t severe enough to stop me from functioning, but they persisted — and I couldn’t ignore them.

As a trained Air Force medic, I’d developed a habit of digging deeper into symptoms. I started researching differentials, and one condition kept resurfacing: cerebral AVM. It felt unlikely, but my gut told me not to brush it off.

The MRI That Changed My Life

I confided in a physician I respected deeply — a mentor and colleague. I told him about the symptoms and the concerns I had based on my research.

Instead of dismissing me, he listened.

He ordered an MRI.

I went on a family trip to Hawaii shortly after the scan. When I returned, I hadn’t heard anything, so I checked the results myself at work (as I was authorized to do).

And there it was:
“Cerebral arteriovenous malformation.”

I felt the ground shift beneath me.

A Life-Threatening Diagnosis: Grade 5 AVM

Further evaluation revealed the full picture:

• Spetzler-Martin Grade 5 AVM (the highest severity level)

• Located in the posterior corpus callosum, deep within the brain

• Considered inoperable at the time due to size and location

Here’s the part that really drove it home:

The AVM carried an estimated 3% risk of rupture per year, compounded annually since birth — which translated to a 78% lifetime risk of rupture by the time I was diagnosed.

This wasn’t just serious — it was potentially fatal. But I had options.

My team recommended a non-invasive approach first:
Gamma Knife radiation.

Gamma Knife Radiation: Hope and Risk

In January 2019, I underwent Gamma Knife radiosurgery — a focused radiation treatment designed to gradually shrink the AVM and reduce the risk of rupture.

The procedure itself went well, but soon after, I experienced complications that taught me just how fragile the balance was in my body. Despite the challenges, Gamma Knife was the safest option to treat something inoperable — at least initially.

Why Sharing My Story Matters

Living with a cerebral AVM is a constant reminder of the fragility of life and the power of persistence. Early symptoms can be subtle, and the diagnosis can come as a shock — but timely detection and treatment can save lives.

And if you’re dealing with an AVM, know that you’re not alone. Medical advances and supportive care can make a difference.

Thank you for reading my story. If you found this helpful, please share to raise awareness about cerebral AVMs and the importance of listening to your body.

—
And as always, Stay Resilient ❤️‍🩹