New user here. Glad I found this page! I am a 51 year old male living in Southern California (San Diego area) and I wanted to introduce myself. I have been lurking the message board for a few weeks before finally deciding to sign up. Lots of good info here.
How I got here…. I thought the story starts (as I read more on this site I realize I have been having other symptoms for years…more on that at the end) around October of 2019 when I started to notice tinnitus and some hearing loss. My tinnitus is not ringing, but buzzing almost like the sound from a transformer. I noticed that I could change the tone and volume with jaw movement. At one of my hockey games, my helmet slipped and I shook my head to get the helmet on correctly and had ringing in my right ear. Fast forward to January of 2020…Went to the ENT and was given a hearing test that showed mild to moderate at high frequencies. ENT was unconcerned that my jaw movements could change the tone and volume of the tinnitus.
Some time in March 2021, I began noticing fullness in my ears and while clearing helped, the fullness would return in moments.Also having a massive increase in tinnitus. Saw a PA in the ENT’s office on April 20th and from his exam he could see that I was not fully clearing my ears. Also during the exam there was popping and clicking of my jaw when I would open and close. PA felt that my ear pressure issues could be allergies and put me on flonase. He also recommended that I see a Dentist who specializes in TMJ issues. I had pretty bad TMJ in my late teens, but I felt that had resolved (or i just learned to deal with it).
A week later I saw the TMJ doc who noted that I do indeed have bite issues; he also saw rather large styloids in the X-Rays he took and referred me to get a Cone Beam CT. CT revealed elongated styloids. Usually you get no information out of the techs, but he was so excited about seeing the biggest styloids he has seen that he cleaned up the image and converted it to 3-D to show me.
Started stalking this page and found the list of doctors who are familiar with and treat ES. Found the only Doc in San Diego on the list (Dr. Brendan Gaylis), unfortunately he is at Scripps and they suffered a ransomware attack. Scripps has been unable to make any appointments since May 1st when the system was taken offline. I hope to be able to get in and see him when they start taking appointments.
Due to the fact Scripps is not able to set up new patient visits, I went back to my ENT (not the PA). He confirmed the CT did in fact show ES. He recommended that I get an MRI to see what has been impacted by the styloids and prescribed a diuretic to see if it helps with the tinnitus and ear fullness. Got an appointment for the MRI next week and will follow up with the audiologist and doc mid June.
After my reading here and other research other symptoms that I have had over the years that I think could be related to ES are:
- I constantly feel like there is something in my throat that I have to clear.
- Lots of times when I think I have a sinus or dental issue the doctor will not find a sinus infection and send me to the dentist. The dentist then finds no dental issue (also happens the other way around).
- High cervical neck issues thought it was related to years of playing hockey, but now not too sure. My neck can go out from towel drying my hair.
- Feeling lightheaded on long drives.
- Odd headaches at the base of my skull.
- Pain in upper neck/jaw when stretching.
Thanks for reading my rambling!