My name is Jessica. I’m 33 and live in NC. I was recently diagnosed yet I’m confused as to what it all means. I have had chronic ear infections since I was an infant. My mom never allowed the doctors to place tubes in my ears because my uncle (her brother) had a horrible experience with them. For years I kept complaining about pain in my right ear, loss of hearing and kept trying to find a doctor that would listen to me. In February 2017 I was diagnosed with a double ear infection. I finished my antibiotic but my right ear still had the infection. I was put on another antibiotic, no improvement, an ear drop, no improvement and going on my 6th week I decided to find an ENT. After multiple visits, ear cleanings, a tube, more cleanings and no improvement, he did a CT scan. I was diagnosed with cholesteatoma. I had surgery in June 2017. The cyst was removed, my temporal bone scraped, my ear drum reconstructed and my ear canal widen. I’m partially deaf in my right ear because the cholesteatoma eroded away some of my hearing bones. I was told it had been growing for some time. I finally felt better.
Fast forward to February 2020. My ENT retires. Both ears start to hurt, headaches, neck pain and dizziness begin. I went to 3 different ENTs. First one said nothing was wrong with my ears, it was probably a migraine and sent me on my way. Second one (saw him twice) and I thought was going to be my saving grace because he listened. He cleaned out my right ear, was afraid to clean out the left because of the crust around my tube so sent me home with ear drops. I returned for my follow up and now he’s saying TMJ, wants me to go to physical therapy and buy a custom made bite guard. My dentist says I do not have TMJ. I find a third ENT, different practice, different city. My tubes are pushing themselves out, ears look fine and it is TMJ. Gives me a high dose ibuprofen (2x a day) and a muscle relaxer for bed time. Go back for a follow up, tubes are still half in/half out, ears look fine and I need to continue with my meds.
My ears still hurt, my head still hurts, my neck still hurts and I’m still dizzy. But I’m only dizzy if I bend over, or tilt my head or turn my neck too far. I get so dizzy that I will dry heave. I decide to visit my primary care doctor. She does a CT scan of my sinuses and an ultrasound of my arteries in my neck. Arteries aren’t clogged. This was her findings for the CT scan: “Normal sinuses.
Mild right to left deviation of the nasal septum. Calcification elongated stylohyoid ligaments. This can be an incidental finding but sometimes is associated with neck pain (Eagle’s syndrome).”
I am going to a different ENT (same practice that did my ear surgery - haven’t been back since my doctor retired - it’s an hour drive one way) on the 19th to discuss options.
Do my symptoms sound like Eagle’s syndrome? I’m single, I work full time, I have 5 dogs and 2 cats. I’m trying to find a 2nd part time, work from home job to help make ends meet. I’m confused, stressed out, exhausted and I am tired of hurting. I’ve read that some people feel like they have something in the back of their throat. I do too but I just thought it was drainage. I sometimes feel like I can’t swallow but I’ve been told that is because of my GERDS. It would be amazing if all these issues were from this and I can have hope to feel better one day but unfortunately due to my experience I don’t have much faith in certain doctors…ENTs being the main ones.
Sorry for the lengthy post. I hope everyone has a great day!