ME/CFS with paraparesis, lost speech and tube feeding, much better after cervical fusion
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 8 years
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
My ME: I have been sick for around eight years as far as I know.
In context ↗ - At worst: Severe
I've moved from severe to moderate with a ton of pacing and probably luck
In context ↗ - Now: Much better
I'm still going fairly steady. ... And this dip is still a dozen times better than I was at my best before the surgery.
In context ↗
Read from 13 of their posts and comments; links to the 8 this page draws on
Summary
This person had ME/CFS for about eight years, moderate to severe with rigorous pacing, then developed paraparesis, lost speech, gastroparesis with tube feeding and breathing stops. A C0-C2 cervical fusion for CCI in January 2026, paid for by crowdfunding, resolved the neurological symptoms, ended tube feeding and greatly reduced PEM. They still pace, get very mild PEM and had a dip about six months after surgery.
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What they tried
What they credit
Their words about each treatment
- rigourous pacing · Helped
I've moved from severe to moderate with a ton of pacing and probably luck
In context ↗ - PT · Not said
14 months of PT, but ultimately it just got too dangerous
In context ↗ - cervical collar · Helped
With my cervical collar though? Nothing. Easy-peasy.
In context ↗ - tube feedings · Not said
I'm still on (very low speed) tube feedings to supplement
In context ↗ - CCI (C0-C2) fusion · Helped a lot
My ME massively improved after my spinal surgery over six months ago
In context ↗
Approaches: Craniocervical surgery · Pacing
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2018 | ME/CFS onset, mild at first then moderateI have been sick for around eight years as far as I know. It might be longer, and that's when I went from mild to moderateIn context ↗ | Mild | |
| December 2025 | worsening neuro symptoms, gastroparesis and breathing stops before surgeryThen I developed gastroparesis ... Around a month before the surgery, my breathing stopped in certain positionsIn context ↗ | Severe | |
| 2026-01-23 | one week after CCI fusion, still in hospital but improving dailySince then, every day is a little better. I can stand and sit up a bit more easierIn context ↗ | Severe | Craniocervical fusion / tethered cord |
| 2026-02-16 | 30 days post-op: feeding tube out, no neurological symptoms, far less PEMI've continued to massively improve. My feeding tube is out, still no sign of neurological symptoms, and an extreme decline in how much PEM I've experienced.In context ↗ | Mild | Craniocervical fusion / tethered cord |
| June–July 2026 | dip over the past month, possibly from changed meds or heatLittle dip this past month, possibly due to changed meds, possibly due to the heath, but I seem to be on the mend again.In context ↗ | Mild | |
| 2026-07-27 | on the mend again after the dip, still much better than before surgerythis dip is still a dozen times better than I was at my best before the surgeryIn context ↗ | Mild |
Adverse events
- Craniocervical fusion / tethered cord“That went okay, until I got a bad vasovagal response during one time. That scared us a little - it almost looked and fell like what I imagine a seizure feels like” In context ↗ Low blood pressure or fainting
- Craniocervical fusion / tethered cord“The vasovagal response seems to have triggered some PEM, but again, not as much as I feared.” In context ↗ Made symptoms worse
- Craniocervical fusion / tethered cord“I'm still struggling to find comfortable positions with my skull fused to my spine, and swallowing is an issue.” In context ↗ Side effects
- Tube feeding (NG, NJ, PEG, TPN)“I stop tolerating tube feedings due to my MCAS” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Some very mild PEM once in a while, but nothing close to the extent I was experiencing before
In context ↗ - Brain fog
I suffered from all the general neurological issues from ME as well, such as brain fog
In context ↗ - Headaches & migraine
my migraines started acting up more too
In context ↗ - Gut problems
Then I developed gastroparesis.
In context ↗ - Breathlessness
Around a month before the surgery, my breathing stopped in certain positions
In context ↗ - Muscle weakness
Almost two years ago, I suddenly started suffering from paraparesis.
In context ↗ - Temperature regulation
developed a more severe heat intolerance
In context ↗ - POTS & dysautonomia
no worsening of my dysautonomia
In context ↗ - Mast cell (MCAS) & allergies
I stop tolerating tube feedings due to my MCAS
In context ↗ - Sleep problems
Today is especially rough with just insane levels of sleepiness.
In context ↗
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