Help Toby Heal After 6 Years of Chronic Pain

The Story of How it All Happened

So... what's with the neck brace?

Six years ago on a sunny May day, I was having a baseball catch with my buddy Tripp. I heard a voice call my name and the sound of excited feet running towards me. As I turned to see who it was, I was greeted by a hug. A running bear hug. I love hugs, but this one included a shoulder to my jaw. Rotational whiplash, anyone?

I immediately knew something was off. But I had no idea how bad it was.

When Things Got Worse

2 months later I went off to college for my freshman year–still feeling the effects of the hug–believing it was “just a concussion.” I tried to lie to myself by taking extra-strength Excedrin every day—more than the bottle said was safe.

(Me, 19, looking alive but feeling dead)

When I came home for Christmas break, mom looked at me and said, “Toby, the light in your eyes is out.”

I didn’t want to, but soon after, I dropped out of college to try and heal.

Being a chronic optimist, I figured a little hard work would launch me back into school by fall. But every doctor, neurologist, and PT I went to only made things worse.

Life in the Dark

My life became simple: I lived in the dark with the shades drawn and a noise machine running because I couldn’t handle light or sound. My brain was pretty jank, and the pain was gnarly.

While I could still move, think, and talk, I was in constant pain—

The list goes on.

In all, I was functioning at about 20% of the person I’d been before.

What I Lost & How It Got Worse

I lost everything I thought I cared about:

My friends went to class in sunny Florida. I went to doctors' appointments in chilly Philly.

Still hopeful, I tried going back to school. My wonderful friends made a huge “WELCOME HOME!” banner. But I only lasted 12 days before the pain overwhelmed me and I medically withdrew. Again.

Dejected, I did the only thing I knew how.

Hitting Rock Bottom

I hated living.

If you’ve seen Toy Story, I felt like Woody the cowboy, left behind in a cardboard box, watching Andy grow up and move on without him.

I lost my personality. I also lost nearly 30 pounds, my confidence, and almost all of my faith in God.

For a full year I wanted to be dead every single day.

(Fake smile for the camera)

(How it really felt part 1)

(How it really felt part 2)

Have You Gotten Any Better?

If you’ve met me in the last two years, you might laugh at how different things seem now.

No, I’m not better. I haven’t had a single pain-free moment–except during sleep–in nearly six years. Every symptom you read above still exists in my life to some degree.

But yes—I’m up from 20% to about 50%. Praise God.

And yes, while I'm in pain, I am very much alive now.

(Me at Chipotle with the boys (the boys not pictured))

(Me talking to some strangers downtown, they had a nice doggie)

(The boys, pictured)

Why Am I Alive Now?

"The law of the LORD is perfect, reviving the soul..." Psalm 19:7a

“It was good for me to be afflicted so that I might learn your decrees.” Psalm 119:71

“My ears had heard of you but now my eyes have seen you.” Job 42:5

My soul is alive because of God! And yet my body still groans for healing.

Now there is good news: we think we found the root cause.

The Root Problem (At Last!)

After 6 years and 30+ medical practitioners/offices (including both high-level western medicine wizards and holistic methods), we believe we’ve found the root. Two uncommon (but treatable) diagnoses:

Simple Medical Explanation For My Arts & English Friends

Medical lingo is hard. To simplify, I filmed a short video for you.

Watch it here.

Medical Explanation Continued:

Here’s what you need to know.

Diagnosis 1: Craniocervical Instability & Ligament Laxity

The ligaments in my neck (where the skull meets the body) are toooooo floppy.

Inside your neck are 3 main structures we'll discuss. There are vertebrae which stack like blocks, muscles that stabilize the vertebrae from the outside, and ligaments which stabilize the vertebrae from the inside. Ligaments nest tightly between the vertebrae, grab tight, and keep the bones unified and aligned.

My ligaments, which are the first line of defense, are failing. Especially two little guys—the alar and transverse ligaments. They’re D-minus students who need detention. One doctor (Dr. Hauser of Caring Medical) says that while my neck isn’t literally broken, it is functionally broken. Hello, nice to meet you, my name is Tobias Leonard Bobblehead DeMoss.

Because these ligaments don’t hold firm, my vertebrae shift over each other like the steps on an escalator. The second vertebrae (C2) pokes into my brainstem (I’ve actually developed a brainstem callous called a pannus), which messes with spinal fluid and blood flow (causing shaking in my brain), adding pressure to my skull and eyes, and sending my central nervous system into fight or flight mode even when everything is safe and fine. Among a lot of other things.

Diagnosis 2: Atlas Subluxation

My Atlas bone—the top vertebra that holds up the skull—is out of place.

In November I saw Dr. Scott Rosa, a world expert in New York (he's treated athletes like Jim McMahon, Super Bowl-winning QB). And true story: he was also very close friends with the guy who invented the MRI machine.

Dr. Rosa was able to get my atlas back into place, and I held the adjustment for three weeks.

(New York, November 2024 with Dad & Chase)

(Dad supporting me while still keeping his radio show ripping)

At the end of those three weeks, the neuro-inflammation decreased, and I felt real relief for the first time in six years. For 3 days I felt non-anxious and able to rest. This was ground breaking for me. I wasn’t totally pain-free, but sleep was great, my brain stopped shaking, and I woke up refreshed, without that general sense of dread (which you feel when your brain stem is compressed).

(Chase & me being young, dumb and cold)

But without strong ligaments, the atlas bone slipped back to its old pattern, and the pain returned.

Still, that glimpse of relief proved we were on the right track. Dr. Rosa said after 6 years of neuro-inflammation, this is expected. He said full relief takes time, but a complete recovery is totally possible for me. He believes the day will come when I’ll be in the gym lifting heavy weights and playing sports again.

He sees it happen often.

A Lasting, Healing Solution?

In order for my first vertebrae to keep its position, we need to strengthen the surrounding ligaments. Then we can put the atlas in place, and it will hold for good.

And God willing, so will my relief.

After every reasonable effort, we’ve confirmed what needs to happen.

Only one clinic in the world treats this exact condition: the Centeno-Schultz Clinic in Broomfield, Colorado. They offer a procedure called PICL (explained here). It’s a regenerative treatment that uses your own stem cells to heal damaged—and very hard to reach—supportive ligaments.

They’ll drill into my hip, extract my own blood cells, process them, and inject the growth factors—through the back of my throat—into the exact ligaments that need healing.

While I can’t say for sure to what extent this path will bring healing, it’s the most logical, targeted, and hopeful option we’ve found. And it has been medically-backed and confirmed by all 3 of the highest level neck, spine and brain specialists I’ve seen (Dr. Scott Rosa, Dr. Chris Centeno, & Dr. Fraser Henderson, not to mention many others of lesser renown).

Full healing or not, I’m expecting meaningful improvement.

So What’s at Stake?

I am told that the sooner I get treated, the better my shot at full recovery. I’m living at ~50% and want to capitalize as soon as possible so I can get to 80–100% while my body is able. That’s what I’m aiming for.

I want to move freely.

Where Your Money Goes

The PICL procedure uses your body’s own stem cells—something that has become widely accepted as wonderful, healing medicine—but that insurance simply does not cover. Sadly, the PICL is never accepted by any insurance. Which is why this fundraiser is for medical costs and medical costs only.

Detailed Cost Breakdown

Each PICL procedure (including travel, medications, a post-op atlas adjustment, and anti-inflammatory food for the week) costs just over $17,000. (I have a detailed budget breakdown & FAQ below.)

I’ve been told by 3 separate doctors familiar with my case & familiar with this procedure (Dr. Ghattas, Dr. Pitts, & Dr. Centeno) that I’ll likely need 3 to 4 treatments over the next two years for the best shot at full healing.

That’s a total of ~$51,000 to $68,000.

(You can access the detailed budget breakdown here. If you still have more questions, you can access my FAQ here.)

Now would be a good time to mention my business. About two years after that whiplash hug, I had a heart-to-heart with my parents. I told them I knew they'd do anything to help provide for me, but I also wanted to create a way to support myself financially—especially if something happened to them before I healed.

(Me with some of my early book launches)

After researching and asking tons of questions, I decided to try publishing books on Amazon. I launched the business in September 2022, beginning with word search books, and through God's grace, the business has grown steadily. Last year, after 2 years of slow, faithful publishing, I hit a milestone: covering all my living expenses for the first time. I now live with some friends in Florida again!

This growth has continued, and I'm optimistic about the future.

This is actually one reason I struggled with asking for financial help with this next chapter. I don’t want to ask people to contribute their hard-earned money if it turns out in time I can cover the costs myself. The reality is while I’m hopeful and working at it, nothing is guaranteed. I really don’t know to what extent (or how quickly) my business will grow and be capable of funding the PICL & the many related procedures and protocols… just like I don’t know how many treatments may be needed or how completely (or not) effective they will be.

To that end, the financial goal of this GoFundMe is to cover costs of the first two of the anticipated 3-4 PICL procedures, keep working at my business so I can pay for the next two without unnecessary stress, pray, and wait upon the Lord to see where He takes all of this next.

(The best group of men a man could ask for)

(Colleen! The church being the church)

(My friends!)

(Tessa, mom, dad & me. Not pictured: Tim, Brittany, Tori, Theodora, & Moose, and soon Zach)

What I Am Currently Doing

I am actively saving for these procedures and have been living frugally for the past 3 years. I am working to grow my publishing business which, as mentioned, allows me to now pay for my own living expenses. I am serving in the church in a worship and prayer role. I am in zero debt. I eat a super clean, whole foods, anti-inflammatory diet (90% of the time ;)). I say these things for one reason: to display that I am serious about my life and my healing, and am not waiting until I am well to make the most of what I've been given.

(Me and some friends performing a song at my Woodhall set last April.)

I've not been perfect, and the road is scary. However I realize I must be an active agent, put my hand to the plow, and let God do the rest.

Final Thoughts

I’ve learned I cannot be a one-man band. I need my friends and family, and they need me.

My physical body needs to be aligned with my physical head—and I want to tell the story of what God has done, so the body of Christ can align under His headship and live in unity, healing, and rest.

I covet your prayers—and, if you're able, your financial help.

Gratefully,

—Toby DeMoss

PS, if you have any practical questions/concerns, I created an FAQ for you. It should explain everything you're still wondering about.

PPS, my friends Jeremy & Paige at Seaside Media made that incredible teaser video completely for free. They're planning to gift me a 25 minute documentary about my health journey so my story can be told. You can see their work here.