Symptoms and Red Flags

This page is not medical advice. It’s my personal experience with a cochlear implant, the symptoms I went through, and the things that stand out to me now as red flags.

If you have an implant and something feels wrong, please listen to your body and talk with qualified medical professionals. You deserve to be

Symptoms I Experienced After My Cochlear Implant

Shortly after activation, I began to notice symptoms that did not feel like “normal adjustment.” These symptoms happened whether the processor was on or off:

  • Pain and discomfort around the implant site
  • Sharp, stabbing pains down both sides of my neck (off and on)
  • Mechanical or electrical-type noises in the implanted ear
  • Sudden loud buzzing in the implanted ear that could jerk me awake, like a shock
  • Tingling across my face, lips and twitching sensations
  • A constant feeling of fullness or pressure between my ears, like my head might “pop, like a balloon".
  • Dizziness and imbalance
  • Visual disturbances (eyes not working together, trouble focusing)
  • Dry mouth and changes in taste

Individually, some of these might not seem alarming. Together, and getting worse over time, they became impossible to ignore or live with.

How My Symptoms Were Handled

When I reported these symptoms, this is what often happened:

  • Some symptoms were not fully documented in my chart.
  • I was told certain sensations were due to my age or other reasons.
  • I was told that once you’re implanted, you’re implanted for life.
  • Other specialists sent me back to the same surgeon, instead of giving a fresh opinion.
  • When I called the implant company, I was told my symptoms were not normal and to see my surgeon even when I had already advised them that "he didn't treat symptoms"

The result: I was stuck in a loop between the surgeon, the cochlear implant manufacturer and other providers that would say, "see your surgeon". All while I just wanted answers.

Red Flags I See Now (Looking Back)

Looking back, here are the things that stand out to me as red flags:

  • Speed of decision
    • Only about five months from losing my hearing to having a implant placed.
    • Very little time to process, get second opinions, or explore other options.
    • Unusual symptoms that didn’t go away
      1. Pain, shocks/buzzing, facial tingling, and pressure that continued long after activation.
      2. Symptoms that affected balance, vision, and daily function.
      3. Symptoms not being fully documente
      4. important details left out of visit notes. (Not documenting my symptoms)
      5. My lived experience not clearly reflected in my records.
      6. Being told “this is normal” or “nothing can be done”
      7. Hearing that symptoms were “nothing” or unrelated, to the cochlear implant.
      8. Messages like “once you’re implanted, you’re implanted for life,” which made me feel trapped-stuck between all of these professionals.
      9. Being bounced around instead of truly evaluated
      10. Going to doctor appointments 2-4 times per week, for 3-4 years.
      11. Delays and confusion around records and device analysis.
      12. Long gaps between when a device analysis was completed and when I actually received the report.
      13. Difficulty getting full, timely copies of records and explanation.      
                                                                                                 

I can’t change my past, but these are questions I wish someone had told me  

  • What are the real risks and what happens if something goes wrong?
  • How many implants has this team done, and what happens when patients have unusual symptoms?
  • If I have problems after surgery, who will take responsibility and follow through?
  • Do you treat symptoms?
  • How quickly and completely can I access my records and device information if I need them?

If You’re Experiencing Concerning Symptoms

I’m not a doctor. I’m just a patient who lived through this and kept records. But if any of this feels familiar to you, here are some steps that helped me:

  • Write down your symptoms with dates and times.
  • Bring a written list to appointments so nothing gets forgotten.
  • Ask for copies of your visit notes, test results, and imaging.
  • Don’t be afraid to seek a second opinion, if another surgeon will agree to see you.
  • If you feel you’re not being heard, keep documenting. Your notes may matter later.

You deserve to be listened to, taken seriously, and given clear information about your own body and your own device.

I was never told that the cochlear implant, could not be implanted or electrodes not being in the cochlea.

I can’t tell anyone what to do. I can only share what happened to me and what I wish I had known sooner.