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 ❤️‍🩹

Navigating a Complex Diagnosis: My Journey Through Rare Disease, Chronic Illness, and Advocacy

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

Hi, I’m Frankie — I’m 33 years old, a disabled Air Force veteran, and someone living with multiple complex medical conditions. I’m sharing my story not for sympathy, but in hopes of helping others feel seen, advocating for change, and holding space for anyone navigating a healthcare system that doesn’t always listen the first time — or even the tenth.

This blog is my way of organizing the chaos. I use tools like AI and technology to help structure my thoughts, because as someone with autism, ADHD, and a major neurocognitive disorder, communicating clearly and logically has become a real challenge. Masking is something I do well — on the outside, I may look "put together," but beneath that is a network of alarms, calendars, checklists, detailed notes, and the support of my husband.

Today, I want to talk about one of my most urgent health issues — undiagnosed and untreated hyperparathyroidism— and how it slipped through the cracks of the VA system for over two years.

In 2023, the VA flagged elevated calcium levels in my labs and entered a referral for Endocrinology. I had no idea. No call. No message. No follow-up. Nothing. I didn't find out until nearly a year later, when Care in the Community called me to ask if I was ready to move forward with my endocrinology appointment — a referral I never knew existed.

This should have never happened.

In August 2024, I finally had my parathyroid hormone (PTH) level checked — and it was elevated at 87, a result that should have immediately prompted further investigation. I was referred again to Endocrinology, but they declined to see me because my calcium levels looked “normal.”

Here’s what they missed: elevated PTH with normal calcium can indicate Normocalcemic Primary Hyperparathyroidism (NPHPT). It’s real, it’s documented, and it’s serious. But it requires a provider who understands the nuance — and who’s willing to dig deeper.

I’ve become symptomatic. Yes, I have fatigue from Ehlers-Danlos Syndrome, but this is different. Since August, my energy levels have dropped sharply. My sleep is unpredictable and fragmented. I now wake between 2–4 AM every day, even when I’m completely exhausted. My go-to sleep supports — including THC — have stopped working.

I'm scared that this will lead to another major flare. I’ve worked too hard to stabilize. I can’t afford to lose access to treatments, especially medications like those for ADHD, which my psychiatrist won’t prescribe if I start losing weight again.

From Air Force Medic to Full-Time Patient

Before I became a full-time patient, I was a medic in the Air Force. For seven years, I thrived in high-pressure medical environments, trained and mentored junior medics, and earned the respect of my colleagues. Medicine wasn’t just a job — it became my language, my special interest, and my safe place as an autistic person.

That experience shaped me into the kind of patient I am today — proactive, hyper-organized, and relentless when it comes to advocating for myself. Not because I think I know more than my doctors, but because I’ve learned the hard way that if I don’t stay on top of every detail, I’ll fall through the cracks.

And I already have.

The Day My Instinct Saved My Life

In early 2019, I underwent Gamma Knife radiation surgery to shrink a massive cerebral arteriovenous malformation (AVM) that carried a 78% lifetime risk of rupture. About a week later, I noticed swelling and pain in my right arm where I’d had an IV. The NP said it was probably just phlebitis. My heart rate was elevated, but they weren't concerned.

Still, something didn’t feel right.

I went to the ER. They found a thrombosis in my basilic vein and a highly elevated D-dimer. A chest CT revealed something terrifying: bilateral pulmonary emboli in all four lobes of my lungs. I was completely asymptomatic. No chest pain. No shortness of breath. Just a gut feeling and a racing heart.

If I had gone home instead of trusting my instinct, I might not be here writing this.

AVM Diagnosis: Another Case of “It’s Probably Nothing”

Backtracking a few months — in late 2018, I began experiencing pulsatile tinnitus, dizziness, and vertigo. It could have been anything. Still, I mentioned to a trusted physician mentor that I’d done some research and wondered about an AVM. He agreed it was worth looking into. He ordered the MRI.

That scan revealed a Spetzler-Martin Grade 5 AVM in my posterior corpus callosum — one of the rarest and most dangerous types. Most people don’t know they have an AVM until it ruptures. Mine didn’t. That MRI may have saved my life.

The Aftermath: Radiation, Hearing Loss, and Cognitive Decline

Within six months of radiation, I lost hearing in my left ear. Within a year, I lost hearing in my right. By two years post-op, I could no longer work due to memory loss, difficulty with cognition, and executive dysfunction.

Eventually, I was diagnosed with Major Neurocognitive Disorder, Autism, ADHD, and a math disability. I'm now under active neurological evaluation to determine whether the Gamma Knife radiation — which research confirms can cause both cognitive decline and hearing loss — is the root cause.

For years, I begged doctors to help me understand what was happening to my brain. They told me it wasn’t serious. That I was overreacting. That it was stress.

It wasn’t.

Layers of Complexity: A Web of Diagnoses

The deeper you go into my medical history, the more tangled it becomes — but each piece matters. Here’s a brief look at the major players:

• Cerebral AVM (diagnosed 2018, resected 2024)

• Pulmonary Sarcoidosis (diagnosed 2020, in remission with annual PFT follow-ups)

• Hypermobile Ehlers-Danlos Syndrome (diagnosed 2022)

• POTS, Dysautonomia, Orthostatic Hypotension

• Gastroparesis, Chronic Nausea

• Mast Cell Activation Syndrome

• Epilepsy Partialis Continua (controlled on Keppra)

• Major Neurocognitive Disorder

• Autism, ADHD (Inattentive Type), PTSD

• Bilateral Sensorineural Hearing Loss

• Military Sexual Trauma Survivor

I use a central port to self-administer fluids twice per week to stay hydrated and prevent fainting. My medications and therapies are tightly coordinated and managed across multiple specialists.

But even with all of this, my recent experience with hyperparathyroidism shows how easy it is for critical care to be missed.

Where I Am Now — And What I Need

Right now, I need a thorough evaluation of my parathyroid function. I want answers, not assumptions. I want an Endocrinologist who understands that normal calcium doesn’t rule out parathyroid disease. I need someone who will look at my full history, not just a snapshot.

This isn’t just about one lab result. It’s about an entire system that repeatedly fails to see the bigger picture — and patients like me, who don’t fit into neat diagnostic boxes.

Thankfully, I’m still fighting. I have providers who listen. I have a neurologist who’s taking my cognitive issues seriously. I’m hopeful. But I also know that without constant advocacy — from me, from my support system, and from people like you — none of this moves forward.

For Anyone Reading This

Whether you're a fellow chronically ill person, a caregiver, a provider, or just someone trying to understand — thank you for reading. If you take away one thing from this, let it be this:

🟣 Listen to your body.

🟣 Advocate even when you're tired.

🟣 Trust your instincts — they might just save your life.

Stay tuned for a weekly Blog, Mondays at 1500 (3PM MST)

Stay resilient,

Frankie