The Mighty Logo

My Chronic Illness Treatment Ended Badly, but I Stand by It

The most helpful emails in health
Browse our free newsletters

I’ve concluded, in my own life, sometimes good decisions are ultimately bad, but that doesn’t make them bad decisions.

I have pondered on this for quite a while. With a complex medical history, revolving around a diagnosis of chiari malformation during high school, we chose some routes in the beginning that have led to some dark alleys in recent years. But, the map we had at that time said to turn, and we did.

We arrived at a chiari diagnosis after I was in a small fender bender, with no “injuries,” just a small dent in the bumper, and a sudden onset of uncontrollable headaches that felt very much like being hit in the back of the head by a baseball bat. I found out later the headache I was experiencing was very often described by others with this diagnosis, exactly the same way.

On the way to being diagnosed with chiari malformations (which causes crowding in the back of your skull), I was first diagnosed with syringomyelia (a pocket of spinal fluid, ballooning the center of the spinal cord). I was told my syringomyelia was in the worst possible spot, and that if the syrinx ruptured, I would be paralyzed or dead. Then, I was told the pocket was growing, and we needed to act right away.

Nothing really showed up on my MRI of the brain, but the surgeon suspected chiari because my brain did seem to sit low in my skull. He recommended brain surgery right away. A couple of weeks after my 17th birthday, I had my first brain surgery. It worked, the syrinx stabilized.

Now, years later, I’ve had three more brain surgeries to remove scar tissue, each one more invasive than the previous, causing ever-increasing symptoms, even affecting my autonomic functions. Then, it was discovered I likely never needed brain surgery in the first place. When I was about 20, they found my spinal cord tethered so tightly, it was pulling on my brain, which is most likely what caused the crowding in the back of my brain, but I will always need more brain surgeries, because of the scarring triggered by the first one. Plus, now I have spine surgeries, too.

We chose a course of action that ultimately ended badly, but I still believe it was the right choice.

To this day, my tethered cord has never shown up on an MRI, CT scan or X-ray. It wasn’t negligence that caused my doctors to miss it. There was no evidence of it being there. I had symptoms, but they matched other conditions as well, and some symptoms I didn’t mention at first, because I’ve had them all my life and thought they were normal. They found my tethered cord by cutting my spine open after I lost the ability to consistently walk.

All we knew when I was 17 was I was in danger, and surgery could save me. Surgery was the best option available. It was a good decision.

At the time anyway.

Original photo by author

Originally published: March 19, 2021
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home