Hi Everyone!
First of all I just want to say thank you so much to those who monitor this site as well as share and give advice. It not only impacted my decision to have surgery and choosing a doctor but also helped me finally be properly diagnosed and gave me peace of mind.
Here’s my story:
I am a professional singer, musician and songwriter. First time I noticed discomfort was four-five years ago when I noticed a sensation like I had something “stuck” in my throat. I immediately thought I had vocal nodules. At that point I had mild voice discomfort and that was my only symptom. I sought out an ENT in Mexicali, BC (Mexico) because I was uninsured at the time. Turns out I did have what are called vocal pre-nodules. They were so tiny it was hard for us to even see them and she thought it was odd that I could feel that. I went on vocal rest and they cleared right away. I thankfully was able to get health insurance right after so I didn’t have to travel to Mexico for a laryngoscopy anymore. My voice dysphonia continued to worsen in the following months. I thought maybe it could be a bit of scar tissue from the pre-nodes so I sought out the help of a professional vocal coach who works with people with vocal injuries. He assured me my vocal problems could not possibly be form very small pre-nodules but nevertheless we began working together to change my singing technique. Other symptoms started to appear little by little. It started with an itchy ear, and neck spasms, pain in the back of the head, itchy tongue and the vocal dysphonia became worse and worse. I felt like a teenage boy going through puberty! At this point I had no idea all of these symptoms were related. I thought it could be a wisdom tooth, maybe an ear infection, anxiety. I went to doctor after doctor to the point where I was being called a hypochondriac by friends and family. Maybe I needed to see a therapist I thought! During the COVID 19 pandemic, the feeling of something stuck become more prevalent. I sometimes get tonsil stones so I got curious and put my finger down my throat and there it was!!! I had a huge lump right under my tonsil. I immediately thought the worst, like I have cancer or a tumor. The crazy thing is after touching the lump my ear ache and neck pain became so worse. So it was during the pandemic I made an appointment with an ENT at Kaiser Permanente. She assured me there was no cancer which made me feel better and that I had acid reflux. A few months went by and something inside told me it she was wrong. I listened to my body and went back to the same doctor and this time she said I had a swollen taste bud. I thought to myself, how can a swollen taste bud be this hard? There is now way! I immediately requested a different ENT with Kaiser. The second doctor told me since I suffered from tonsil stones it was probably a tonsil stone that was stuck and needed to get my tonsils out. I scheduled a tonsillectomy. I asked if I needed an MRI or CT scan and he assured me I did not need it. Something still didn’t feel right so three weeks before my scheduled surgery, I went back to the ENT in Mexico, Mexicali BC. Her name is Dr. Diana Paz and is a fabulous doctor. She felt the lump and immediately knew it was Eagle Syndrome but she ordered a CT scan just to be sure. At this point I had absolutely no idea what Eagle Syndrome was. The CT scan in fact confirmed the elongated styloid on the right side!!! I cried with relief and immediately knew this was it! I was so happy to finally know that all of my symptoms were connected and that I wasn’t crazy. I went back to Kaiser and requested a CT scan to confirm my diagnosis and immediately canceled my tonsillectomy. The Kaiser Dr. confirmed the diagnosis and referred me to Dr. Cognetti. At this point the Kaiser doctors were telling me surgery may not help my symptoms but after reading the stories on this forum I wanted to speak to a specialist to figure it out for myself. Dr. Cognetti met with me via telemedicine (video) and I sent my CT scan in advance via mail. He was so kind and took his time speaking with me. He recommended surgery and said it would help relieve some of the symptoms. SIDE NOTE: At this point doctors don’t know why and are unsure why Eagle Syndrome has impact on the singing voice but as I research more and more it seems there are a lot of singers in my shoes. My suspicion we are more aware of our anatomy as far as the mouth, ears, nose and throat sense symptoms sooner.
After a long back and forth with the insurance company, they finally agreed to pay for my out of network surgery due to the fact they could not find an expert within the network. I had to fight really hard for this! It was a couple of months of emails, phone calls and following ups and lots of tears and frustration. I’m scheduled for surgery with Dr. Cognetti in three weeks, flying to Philadelphia on November the 3rd and returning November 7th. I am equal parts terrified and excited! I’m scared that I won’t regain the strength of my voice and that the symptoms will not go away. I’m scared of permanent nerve damage. I know I have to take this risk and I thank you all for giving me the courage to make this decision.
Is recovery painful? I had fibroids removed and that was an awful recovery! Is the pain comparable or mild in comparison?
How long before you all could go back to work and speak normally or get along ok? I am self employed and can’t afford to lose too much work so an estimate would be greatly appreciated.
Thanks again! Any advice would be greatly appreciated.
