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 my life back.

  • 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 referred for a cochlear implant evaluation.
  • In only about five months, I went from losing my hearing to hopefully regaining my hearing.
  • December 29, 2021 – Cochlear implant surgery at a Mayo Clinic and Dr. Driscoll in Rochester, MN.  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 like a balloon"
    • 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 and I don't treat symptoms".

Mid–Late 2022 – Vision & Balance 

  • 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 were not working together.
    • We worked on exercises to help, but the underlying cause was still not clear.
  • During this time, I also made multiple calls to to Cochlear Americas 
    • I described my symptoms.
    • I was told they were not typical.
    • I was told repeatedly to “see your surgeon,” even when I explained that he already told me "I don't treat symptoms".

2023-2024 – Years of Searching for Answers

  • Over the next several years, I had 300 + doctor visits, looking for answers.
  • I bounced between providers and clinics, often sent back to the original team.
  • My everyday life was affected by pain, dizziness, visual problems, and fatigue.
  • i tried to get second opinions from cochlear implant specialists, however I was always told to see the implanting surgeon, WHO WOULD NOT investigate why I had these odd symptoms.  I was on my own and very thankful for my primary care doctor.  Although he was not educated in cochlear implants. My PCP and Vestibular PT's helped me manage my pain.
  • Only otolaryngologist and audiologist are educated and trained in cochlear implants.
  • I kept my own notes, logs, and records because I felt like Dr. Driscoll and his staff were minimizing my symptoms, and not documenting my symptoms, which got worse as time went on.
  • I called the manufacturer multiple times. On one of my last calls they said, "you symptoms are not normal, see you surgeon". Again I told them that he has already told me "I do not treat symptoms ".  I begged them to call another otolaryngologist/audiologist and get me referred to them. It worked, I was going to get a second opinion in mid 2024.
    I seen the new audiologist and once she uploaded the program in my processor, her face said, "WOW" but not in a good way.  She found out that my processor was programmed outside of the cochlear guidelines.
  • I ended up seeing another cochlear audiologist (due to extenuating circumstances). She found that the inflammation in my head is what she would expect to see right after surgery. I said, "but it has been three years. She was going to see what "her otolaryngologist" had to say about it. He said, "see the implanting surgeon"

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 "other issues" due to my surgeon's negligence.

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 and hoping to help others with ODD SYMPTOMS WITH YOUR COCHLEAR IMPLANT.  Only to say what I did to help myself.  

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.