TIMELINE

This timeline walks through my cochlear implant journey – from sudden hearing loss, to implant, to explant, and the long process of trying to get answers.

 

 

 

 

2021 – Sudden Hearing Loss & Fast Decision

 

 

• May 2021 – I was diagnosed with a brain tumor, an Acoustic Neuroma.
• July 2021 - I had the tumor removed and lost the hearing in my left ear. 
  
• I inquired about a cochlear implant and was told, "you are the perfect candidate for an implant. 
• I was quickly referred for a cochlear implant evaluation.
• In only about five months, I went from losing my hearing to having surgery scheduled.
• December 29, 2021 – Cochlear implant surgery at a large medical center. I trusted the specialists and hoped this would help me hear again.

 

 

 

Early 2022 – Activation & New Symptoms

• January 10–11, 2022 – Implant activation.   Things did not feel right.
• Very soon after activation, I began having symptoms, including:
  
  • pain around the implant area
  • sharp, stabbing pains in my neck
  • mechanical noises and sudden loud buzzing in the implanted ear
  • facial tingling and twitching sensations
  • constant pressure in my head, like it might “pop”
  • dizziness, dry mouth, and changes in taste
  • February 2022 – Follow-up visit with my surgeon.
  • I tried to report multiple symptoms.
  • Some were minimized or not fully documented.
  • I was left with the message that once you’re implanted, you’re implanted for life.

 

Mid–Late 2022 – Vision & Balan

• My symptoms continued and got worse instead of better.
• I developed more vestibular and visual problems – dizziness, imbalance, and trouble with my eyes working together.
• I was referred to vestibular physical therapy.
  
  • PT noticed issues with my eyes teaming and my balance.
  • We worked on exercises to help, but the underlying cause was still not clear.
• During this time, I also made multiple calls to the implant company:
  
  • I described my symptoms.
  • I was told they were not typical.
  • I was told repeatedly to “see your surgeon,” even when I explained I wasn’t getting help there.

2022–2024 – Years of Searching for Answers

• Over the next several years, I had 300 or more doctor visit.
• I was bounced between providers and clinics, often sent back to the original team instead of getting a fresh look.
• My everyday life was affected by pain, dizziness, visual problems, and fatigue.
• I kept my own notes, logs, and records because I felt like I was the only one tracking the full picture.

November 2024 – Explant Surgery

• November 5, 2024 – The implant was finally removed (explant surgery).
• During surgery, it was discovered that the electrodes were not actually placed in the cochlea the way they should have been.
• After explant, some symptoms changed, but I was still left with long-term effects and a lot of questions.

2025 – Device Analysis & Delays

• January 2025 – The device analysis was marked as completed (according to later records).
• I did not receive that analysis right away.
• September 2025 – I finally received the device analysis and learned more about what had been found.
• The long delay between completion and when I received the report raised serious concerns for me about transparency and access to my own information.

Oversight & Advocacy

Because of everything that happened, I turned to oversight agencies and documentation:

• I filed an FDA MedWatch report about my cochlear implant, the symptoms, the explant, and what was discovered.
• I filed a complaint with the Office for Civil Rights (OCR) about delays and difficulties in getting records and device information.
• I began building detailed binders, timelines, and this website so my story could be seen in context, not just as a few lines in a medical chart.

Why This Timeline Matters

This timeline is not medical or legal advice. It’s my lived experience:

• how quickly things moved from surgery, to hearing loss, to surgery
• how early symptoms were handled on I'm implant surgery 
• how long it took to get to explant and answers
• how hard it was to access complete information about my own care

If you’re considering an implant or dealing with unexplained symptoms, I hope this helps you ask questions, trust your instincts, and document your own journey.