Autophony and Tinnitus After Surgery for Glomus Tympanicum Tumor

Hi everyone,

I apologize for the lengthy post, but I'm really hoping to receive some advice.

About five years ago, I started experiencing pulsatile tinnitus, which alternated between being very quiet and extremely loud. Despite having no other symptoms and perfectly fine hearing, after several tests and consultations, I was diagnosed with a glomus tympanicum tumor. I underwent surgery in September 2021, and the tumor was successfully removed. However, the surgery left me with new problems. Along with the persistent pulsatile tinnitus, I also developed constant autophony, conductive hearing loss, and continuous white-noise tinnitus, with the autophony being particularly troublesome.

It was discovered that the surgery had completely obliterated my eardrum. After waiting a year for another operation to repair it, I still faced the same issues as there was a small hole in my eardrum. Another year and a half passed before I had another operation to successfully fix the eardrum.

However, despite the improvement in my hearing, the autophony and white-noise tinnitus persists. I have undergone a CT scan to look for any abnormalities, but nothing has been found as a possible cause. Patulous Eustachian Tube has been ruled out, and apparently, all the hearing bones are undamaged. I now have to wait until the end of October to speak to another consultant.

My biggest fear is that they will not find anything wrong and close my case. The problem is, I can't prove what I'm hearing.

Has anyone else experienced anything similar? Do you have any suggestions? I would greatly appreciate hearing about possible causes and solutions.

Thank you.

Mandy