Live Well With Chiari (Without Surgery)

I’m not an authority on Chiari malformations. I know slightly more about the condition now than I did in 2016 when I held my original MRI report in my hand. What I DO know is how to live with it—and live well—most of the time. My hope is to help others do the same.

 DISCLAIMER: I am not a doctor and this none of what I share should be considered medical advice. These are methods and lifestyle changes that have greatly improved the quality of my own life. For anyone who isn’t ready to go under the knife, some of these ideas may help.

A few notes about me:

2016 MRI diagnosed: 18mm Type 1 Chiari malformation; no syrinx or other complications.

I met with a neurosurgeon who was preparing me for decompression surgery. No other options were offered at the time, but I was a candidate for surgery because my case was considered severe, and I was highly symptomatic. I did not have surgery since the outlook was only a chance of some relief.

2024 MRI update: 20mm Type 1 Chiari malformation; still no syrinx or other complications.

I met with a neurologist who offered prescriptions for pain relief if/when I needed it. I currently have a prescription for prednisone and gabapentin to use ONLY if I get a respiratory infection and see an increase in head pain from the cough.

**At the time of writing this, I haven’t had to use these prescriptions and do not know if they will be effective. I am almost completely symptom-free 95% of the time, so daily medication was not necessary or desired.**

my Chiari Symptoms:

Head pain – in the form of pressure headaches that feel like a hit to the back of the head with a hammer. The pain then radiates around the top of the head to the eyes, then back down to pool at the base of the skull. The pain only stops if I hold completely still until the pressure recedes.

Triggers: coughing, laughing, bending, pooing, sitting up, laying down

Severity: Level 10 out of 10

Frequency:

2016 - Daily/multiple times a day

2024 – Rare; only accompanies periods of respiratory viruses (coughs)

Cough – persistent dry cough preceded by odd tickle in throat

Triggers: poorly ventilated areas, certain perfumes, candles, household cleaning chemicals, stress, allergies

Severity:

2016 – level 10 out of 10

2024 – Level 1 out of 10

Frequency:

2016 – Daily/multiple times a day

2024 – Never, unless triggers are high

Others:

Dizziness

Trouble swallowing

Lethargy

Fatigue

Depression

Poor coordination/clumsiness

Tingling in hands/feet

“Electric” feeling / some muscle weakness in my arms

Eye sensitivity

Visual hallucinations - particularly at night

To be clear, at the time of my diagnosis in 2016, Chiari head pain ran the show. I was deeply depressed and had no quality of life because the pain was so severe. The surgery wasn’t a guaranteed fix, so I decided to try other, less traditional options for relief. Here is what I’ve done to live (mostly) Chiari free. Click on the links below to read more:

Take a Life Inventory

Reduce Triggers

Decompression Therapy

Untethering – Chiari Version

Improve Overall Health

Environment

Internal work