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Still Struggling After Jaw Surgery: The Recovery Reality No One Tells You

Two years ago, I had double jaw surgery for UARS.

£25,000. Twelve weeks off work. Brutal recovery.

The surgery was a "success" on paper: Airway doubled. AHI dropped. Surgeon thrilled.

I thought: Finally, I'll be normal.

Two years later: I'm still struggling.

Not every day. But many days. Brain fog. Exhaustion. Feeling like I didn't sleep.

This is the recovery reality no one prepared me for.

What DJS Fixed (And What It Didn't)

What It Fixed:

✅ Airway size (doubled from 150mm² to 300mm²)
✅ AHI dropped from 8 to 2-3
✅ Oxygen desaturation events minimal
✅ Stopped mouth breathing at night

What It Didn't Fix:

❌ Nervous system dysregulation
❌ Sleep anxiety
❌ CPTSD
❌ Exhaustion (better some days, terrible others)
❌ Brain fog
❌ The learned association: Sleep = danger

Surgery is mechanical. It physically enlarged my airway. But it couldn't undo years of trauma. Couldn't retrain my nervous system to feel safe during sleep.

That's the gap where most of us are struggling.

The Physical Recovery Was Longer Than They Said

What surgeons tell you:

  • Week 1-2: Liquid diet, swelling, pain
  • Week 6-8: Back to work
  • Week 12: Fully healed

My reality:

  • Week 1-2: Hell. Couldn't breathe through nose, liquid diet torture
  • Week 6-8: Returned to work but exhausted
  • Week 12: Swelling mostly gone but still adjusting
  • Month 6: Finally starting to feel "normal" physically
  • Month 12: Physical healing complete

Even the physical recovery took twice as long as they said. But that was nothing compared to the psychological part.

The Psychological Recovery No One Mentioned

This is what blindsided me.

Your face changes. Even subtle changes feel massive when it's YOUR face. I didn't recognize myself in the mirror for 6 months. Had to grieve the face I had.

Surgery itself is traumatizing. Major surgery on your face—one of your most identity-tied body parts. If you already have CPTSD, this can re-trigger everything.

Post-surgical depression is real. Months of physical limitation. Watching your face change. Hoping for life-changing results, getting gradual improvement instead.

The "it should have fixed everything" despair. You did the biggest, hardest thing. Invested huge money, time, pain. And you still feel terrible? The despair is profound.

My Timeline:

Months 3-6: Deep depression. I did everything right, why don't I feel better?

Months 6-12: Slow acceptance. Maybe I won't be "cured." Maybe that's okay.

Months 12-18: Discovering the nervous system piece. Oh, THIS is why.

Months 18-24 (now): Working on trauma healing alongside the mechanical fix.

The Nervous System Doesn't Automatically "Catch Up"

Before surgery: Years of UARS = years of my nervous system in survival mode. Sleep = danger.

After surgery: Airway is bigger. But my nervous system doesn't know that. It's SURE sleep is still dangerous.

It takes ACTIVE RETRAINING. Months post-surgery, I started Somatic Experiencing therapy. Learning: "Your body is running old software. We need to update it."

That's the work I'm doing now. Not more surgeries. Nervous system healing.

Would I Do It Again?

Honestly? I don't know.

Some days yes (my airway IS better, that matters).
Some days no (the psychological toll was enormous).

It's complicated. And that's okay.

What I Wish I'd Known

Before surgery:

  • Start trauma therapy BEFORE (build capacity)
  • This won't be magic. It'll help, but it's not a cure.
  • Physical recovery: 3-6 months. Psychological: 12-24+ months.

After surgery:

  • If you still feel terrible at 6 months, that's not failure
  • You might need nervous system work as much as you needed the surgery
  • Your experience is valid even if your metrics are "good"

For Those Already Struggling Post-Surgery

If you're 6, 12, 18 months post-op and still struggling:

You're not alone. 50-70% of DJS patients still have some symptoms.

You're not failing. The surgery didn't fail. You just need the OTHER piece: nervous system healing.

What to do:

  • Rule out mechanical issues (follow-up sleep study, CBCT)
  • Find a trauma-informed therapist (SE, IFS, EMDR)
  • Give yourself time (12-24 months is realistic for full integration)

You deserve support. You deserve to be heard.

The Truth About "Success"

"Success" on paper doesn't always mean feeling better immediately.

The physical recovery is hard. The psychological recovery is harder.

If you have CPTSD or nervous system dysregulation, surgery alone often isn't enough. You need both: Mechanical fix (airway) + Nervous system healing (trauma work).

I'm two years post-op. Still figuring it out. Still struggling some days. Also having more good days.

If you're considering surgery: Go in with eyes open. It's not magic. But it can help.

If you're post-surgery and struggling: You're not broken. There's more work to do, but there's hope.

Recovery is not linear. It's not quick. But it's possible.

For more on the nervous system-UARS connection, read: The CPTSD-UARS Connection

Note: I'm not a doctor. This is my personal experience. Consult medical professionals for your situation.