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 ❤️‍🩹

Grieving Myself: Living with Dementia as a Young Adult

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

I’ve been really struggling lately — mentally and physically. My fatigue is worse, my pain is worse, my memory and focus are worse, and even my hearing and ability to process sounds is deteriorating. I’m completely burnt out, and I felt like people needed to hear the real thoughts that constantly plague my mind. I think I’m going into Autistic burnout.

As an Autistic person, I have delayed processing, which means when something happens — happy, sad, or traumatic — I don’t process it at the time. Sometimes it hits minutes later, hours later, days later… or even years later.

 The Diagnosis That Changed Everything

I was diagnosed with dementia at 26, but by then, my health had been declining for a few years and I had gone from leading in a high pressure medical environment to being fired for my limitations working as a clinical receptionist... Unfortunately the diagnosis itself fell by the wayside amid the chaos because I simply didn’t have the capacity to fight for it at the time. I was too scared, too tired, too sick.

I lost the version of me who could work, thrive in my special area of interest — medicine. I was sharp, organized, confident. Now, I’m a stay-at-home mom, homeschooling my daughter, and focusing on therapy and medical appointments. I have new purpose — but the grief is still real. Sometimes I wish people understood that losing your hearing or losing your ability to function cognitively feels as if someone has just amputated your arm. I sometimes wish there was a visible sign or indication to prove that yes, I am disabled, but would be insane. I shouldn’t have to prove anything. People should just be more capable of compassion, understanding and empathy. Full stop. Understand us. Accommodate us. Accept US. Just as we accept everyone else.

Coping with Hearing Loss & Cognitive Decline

Along with dementia, I lost my hearing and my ability to process sounds like everyone else. I have to wear hearing aids, and despite using calendars and reminders obsessively, I sometimes show up on the wrong day, at the wrong time, or late.

It’s not just embarrassing — it’s guilt-inducing, because I know my struggles inconvenience others. I’ve always been dependable and punctual, but now I can’t always be the person I used to be.

Phone conversations or any conversation really are extremely difficult because not only do I have hearing loss in both ears so it’s hard to hear on the phone or in a crowded room, I also have auditory processing disorder and memory issues so written communication is honestly the best way to communicate with me if you want me to remember the message you’re trying to get across.

Even on “good” days, I am still sick, still disabled, and still struggling to function in ways most people take for granted.

Anger, Research, and the Medical Response

After my diagnosis, no one cared to investigate the cause of my cognitive changes and hearing loss. I was 26, and no one thought that was alarming so I did what I always do: I hit the research hard.

What I found shocked me: Gamma Knife radiation can cause major neurocognitive disorder (dementia) and hearing loss due to tissue damage. Yet, the medical community refuses to admit it or even investigate it. If I had a confirmed cause, I could accept myself the way I do with my autism. I could explain myself and stop people from assuming, “You just have a lot going on.” This is not the same. 

Grieving Myself

I feel like I’m grieving myself — the person I thought I would be. I look back on my military career as a medic and conversations with the doctors I worked with. One of them said, “Sgt, why haven’t you gone to medical school? You’d be an amazing physician.” That memory rips my heart out. I will never be who I wanted to be.

Even as I’m learning to embrace the new me, I am still in deep mourning — a grief so profound I can’t even put it into words. The person I was, the life I imagined, the abilities I had… they’re gone, and some days that loss feels unbearable. It feels like part of me died.

Living with Invisible Disability 

What makes this journey almost intolerable is the dismissal from people who say, “Well, you look and sound great!.” While this is not ill intended, it’s harmful because my struggle is invisible. They see a smile and assume I’m fine, but this has been life altering for me.

But I’m still here. I’m still fighting. I’m still showing up — even if no one sees the battles I fight inside. Chronic illness and invisible disability are lonely, but I refuse to stop trying.

Finding Purpose & Resilience

I’m learning, slowly and painfully, to embrace this new version of me. I may not be the person I once was or that I planned on being but I’m still capable of love, resilience, and showing up in my own way. I have a lot to give to the world.

If my story resonates with you — whether you’re navigating chronic illness, brain injury, or invisible disability — you are not alone.

If you don’t live with any of this and are just here to learn then I encourage you to follow me on YouTube, Facebook and Instagram to learn more!

And please, reach out! I love swapping stories and bouncing ideas off of each other to help advocate for our health.

And as always, stay resilient ❤️‍🩹