# Chapter 9: The Long Road to Understanding
It took me decades to understand my own body. Not because I wasn’t paying attention, but because no one was explaining anything. The doctors I saw for years treated each symptom like it existed in isolation. Clubbed feet were one problem. Neck pain was another. Balance issues were something else entirely. They’d give me a pseudo-fix—maybe some exercises, maybe some medication, maybe just a pat on the head—and send me out the door.
I didn’t know any better at the time. I trusted them. I thought they understood what was happening. They didn’t.
It wasn’t until after my Arnold Chiari Malformation diagnosis in 2009 and my decompression surgery in 2010 that the real journey of discovery began. And even then, it took years—years of being dismissed, years of symptoms that didn’t make sense, years of doctors who couldn’t connect the dots.
## The 2009 Psych Ward Incident
The moment I first wanted to write this book wasn’t after I understood everything. It was in 2009, when the medical system showed me exactly how broken it is.
After my fall on the ice that year, I was diagnosed with Arnold Chiari Malformation and a posterior fossa arachnoid cyst. But the neurologist didn’t believe it. He put me in a psychiatric ward, telling my wife I was making everything up.
Before that, the neurosurgeon had shuffled my MRI and tossed it aside on the counter, saying “someone will tell you that you have Arnold Chiari but…” and then left the room without another word.
I spent three days in that psych ward. The neurologist and neurosurgeon stood by my bed and told my wife I made up everything.
But their own records had a comment from an ER nurse at Defiance Promedica that eventually made the psychiatrist in the ward question why they put me there. When I finally met with the psychiatrist—my first meeting with her after three days—she asked me why I was there. I told her I had no clue.
She referenced my records and pointed out that the ER nurse had written that my eyes were “gray like a child’s crayon.” That’s a neurological sign, not psychiatric. The nurse had transferred me to Toledo Hospital thinking I was having stroke symptoms.
The psychiatrist looked at me and said something that changed everything. She pointed out that I have something very serious going on compressing my cerebellum and that I must fight to get better doctors to find out what is going on.
She also noted the things I had done to help other patients cope while I was there. She suggested she would love to have me as an employee but I did not need to be in the ward.
## The First Act of Advocacy
After being released from the ward and before seeing my PCP, the first thing I did was research Arnold Chiari Malformation. I found online support groups and mostly read other patients’ experiences, trying to see for myself that this is NOT what I had.
But after hearing one patient after another practically write my own thoughts, I started talking privately with the moderator, then a few public posts. That convinced me there is enough evidence in symptoms to demand that visit to Cleveland Clinic.
What struck me most was how other patients described the pain. They don’t call it a “headache” – they consider that an insult. The suboccipital pain, the pulsating of CSF in the back of the head – it’s so far beyond any 1-10 pain scale for a headache that it’s insulting to even associate it with one. I get migraines, severe migraines. But they’re nothing in comparison to what we call a Chiari “headache.” Reading that, I knew immediately: this is exactly what I’ve been experiencing.
That was perhaps my very first act of advocacy for my own health. It was perhaps the first time I stood knowingly against medical advice and insisted they were wrong. Not audibly to anyone, but in my gut I knew they were wrong and didn’t want to accept it as an answer.
Believe me, I’m so accustomed to just accepting what is that I would have accepted whatever Cleveland doctors had to say. But when my PCP didn’t even listen and sent me to a cervical specialist despite what I said to him—that annoyed me.
But I thanked him anyway, as it led to me actually getting help and understanding.
## The Cervical Specialist and the Surgery
The cervical specialist actually listened. He understood what was happening. He sent me to Cleveland Clinic for my decompression surgery in 2010.
My PCP later sarcastically asked me, “So did your Chiari surgery help anything?” He was being loving but sarcastic, as he never believed I had ACM. He was friends with the doctor who put me in the psych ward insisting I don’t have it. They all totally ignored the large cyst except for the psychiatrist.
## The Surgeon’s Comment
After my first surgery in 2010, my brain surgeon mentioned something in passing. He told me I had “a nerve in my neck with permanent damage.”
I acknowledged it as fact. I didn’t ask questions. I didn’t press for details. At the time, I assumed it had something to do with the constant tinnitus I was experiencing—ringing in my ears that never stopped. I filed it away as just another thing I’d have to live with.
I didn’t know then what I know now. I didn’t know that nerve might have been my vagus nerve. I didn’t know the vagus nerve was the key to understanding so much of what I’d been experiencing my entire life.
## The Years of Dismissal
After surgery, I thought things would be clearer. I thought someone would finally explain how everything connected. They didn’t.
The doctors I saw continued to treat each symptom separately. The neck pain was one thing. The balance problems were another. The drop attacks—those sudden episodes where my legs would give out—were something else entirely. No one connected them. No one explained how they might all be related to my Chiari malformation, or to the arachnoid cyst that remained inoperable in my posterior fossa.
I kept going to appointments. I kept describing my symptoms. I kept leaving without answers.
## The Sciatica Incident (2013-2014)
Somewhere between 2013 and 2014, I started having severe spasms in my right stump. Yes, the right side again. The pain was severe enough I couldn’t tune it out. It felt like the muscle was being torn loose from the bottom of my stump.
I went to the local ER. They saw “Arnold Chiari Malformation” in my medical chart and sent me to Cleveland Clinic—some three hours away. Why? Because ACM showed up in my chart.
The cause of the pain was simply sciatica pain or nerve spasms. They just get so severe it feels like my muscle is being torn loose from the bottom of the stump.
So they sent me on a three-hour drive for sciatica pain. This shows how much many doctors don’t understand or have interest in helping if they do not understand a patient’s different conditions. They’d rather pass you off than try to understand how your conditions interact.
## The Colorado Fall
In September 2023, everything changed. Though not in the way you might expect.
My wife and I had driven to Colorado to help our son, who was in a pickle. I drove most of the way home. By the time we got back, I was exhausted and in pain. The next day, I was sitting in the house without my legs—my prostheses off—just trying to recoup as best I could.
My wife came in wanting me to start the lawn mower. We went out in my wheelchair. I stood on my knees to give myself leverage to pull the mower cord. When I pulled it, the wheelchair went over backwards.
I landed completely on the posterior fossa of my skull—the exact location of my arachnoid cyst.
I ended up at the University of Michigan. They diagnosed me with a slight concussion from the fall. But they did something no other doctor had ever done for me.
They explained the vagus nerve.
## The Vagus Nerve Connection
For the first time in my life, someone explained how the vagus nerve is involved in everything else going on. They explained how it originates in the brainstem—right where my Chiari malformation and arachnoid cyst were compressing everything. They explained how it controls heart rate, blood pressure, digestion, swallowing, breathing. They explained how compression of the vagus nerve could cause drop attacks, cardiovascular instability, gastrointestinal dysfunction, autonomic storms.
A visit with the concussion doctor revealed how much the vagus nerve does in our body. Upon asking me a series of questions, I began to realize how many of my symptoms are because of the impingement of the vagus nerve.
Prior to that, I had no idea. I thought everything was Chiari. But in fact, it seems the cyst is the biggest culprit and just feeds the other issues.
Suddenly, so much made sense.
The drop attacks that had been happening since my fall on the ice in 2009—they weren’t just “balance problems.” They were vagal syncope, my vagus nerve misfiring.
The cardiovascular issues, the blood pressure fluctuations, the heart rate variability—they weren’t separate conditions. They were vagus nerve dysfunction.
The swallowing difficulties, the choking episodes I’d had since childhood—they weren’t random. They were vagus nerve compression.
The autonomic dysfunction, the temperature regulation problems, the fatigue—it all traced back to the vagus nerve being compressed in my posterior fossa.
I sat there listening, and I thought about my surgeon’s comment after my 2010 surgery. “A nerve in your neck with permanent damage.”
I wondered then if he was talking about the vagus nerve. I’ll never know for certain because I didn’t ask questions at the time. But now it makes sense. The vagus nerve had been compressed by my Chiari malformation and my arachnoid cyst for my entire life. It had been damaged. That damage was permanent.
## The Realization
This is what I’ve wanted to write about since 2009. Not because I understood everything then, but because I saw how the medical system treats patients like me—people with complex conditions that don’t fit neatly into their training.
They’re equipped for broken bones and straightforward emergencies. But when you have multiple conditions that interact in ways they don’t understand, they don’t know what to do. They dismiss you. They send you away. They treat each symptom in isolation instead of looking at the whole picture.
That’s why this book exists. Not to blame doctors, but to explain what it’s like to be a patient with conditions they don’t understand. To show how the medical system fails people like me—not out of malice, but out of ignorance and a system that treats symptoms instead of people.
—
*Continued in Chapter 10…*