Hello, new here! I recently found out about ES after dealing with TMJ issues over the last several months but after stumbling upon ES, my symptoms are also relating to ES as well. I apologize in advance for the long post and backstory.
Last June 2022 I saw an ENT: for several months prior I was experiencing some pretty bad ear pain (lots of pressure, pain inside and around ear), nausea, and trouble swallowing. It almost felt like my throat was too small for swallowing my food if this makes sense. ENT told me I had allergies, crazy large tonsils and acid reflux, prescribed me some meds and sent me on my way. Never had allergies before. Ear pain didn’t get better but it also didn’t get worse so I left it alone.
Then in July I saw a new dentist who told me I grind my teeth. I’m 30 and I have never been told by any dentist that I grind my teeth nor has my partner of 4 years ever told me I’ve made a peep in my sleep or grind. The dentist scared me into the dangers of not wearing a night guard and gave me this big bulky hard night guard. It caused me to clench. I was waking up in the middle of the night completely clenching the night guard. After a few months and me not thinking much of it (because I don’t have experience with night guards so no idea what the protocols are here) I kept wearing it. In January is when I started experiencing TMJ pain. I was waking up with bad headaches, jaw pain, pain with chewing, clicking popping, cracking sounds. I saw 2 dentists after that who were of no help. One gave me botox (kind of helped) and both told me to just keep wearing the night guard but didn’t listen to my full story.
All of the jaw and ear pain occurred only on the right side.
This February I finally found a dentist who truly listened to me, told me to stop wearing the night guard until I see a TMJ specialist and explained my whole panoramic x ray to me (over crowding in bottom teeth mostly) and maybe a potential partial slipped disk on the right side. I didn’t know anything about ES at this point so didn’t look for or ask about the styloid process. He told me I am not crazy, believes my symptoms are happening and that the night guard could have definitely thrown my jaw off if I didn’t really need it in the first place. I felt relief after several dentists brushed me off.
I have an appointment next week with a Dr. Tanaka, an Oral and Maxillofacial Specialist at Penn Medicine’s Center for TMJ to see if something is actually wrong with my TMJ. I’m also going to ask her if she knows anything about ES.
Here is where ES comes in. My right ear pain has been increasing severely over the last few months, bad. I have been getting some throat pain, still trouble swallowing, throbbing pain in cheek/jaw, more headaches lasting longer than usual, dizziness. These feel different from the TMJ pain I was experiencing before but the one that is the most concerning for me is I can now feel something on the right side below my ear in my neck that is poking near my ear area and feels it is scratching/poking against my jaw bone or just below my jaw bone and it feels SHARP. If I made a certain movement while laying down or just moving my mouth a certain way I will get a sharp jab feeling. Although I don’t know for sure what’s happening internally, this is the best way to describe it. I’m feeling very scared and after researching the symptoms it led me to Eagle Syndrome. I feel I could still have TMJD as well but what is throwing me off is feeling like something very sharp is poking me inside and around my ear/jaw area. I’ve looked in and around my tonsil area and can’t seem to see or feel anything as others have reported.
I’m seeing my dentist this Wednesday and want to ask for my panoramic x ray to see if I can locate the styloid process on each side. Hoping it can show something.
I then called around doctors on the list for Pennsylvania and I will say calling Dr. Cognetti’s office was not a good experience. The receptionist was not friendly and told me I needed to mail in records and he would review and call me if he felt like I needed an appointment with him. They don’t do fax or sending records electronically. Found it strange they need it all mailed in 2023. I asked specifically what kind of imaging/scans he needs and she basically wouldn’t tell me. She said “whatever you have.” Right now, I don’t have anything and am just desperate to find a doctor who can at least help get me proper imaging, diagnose me or rule this out. She had a very elitist attitude and then told me “well he only sees Eagles patients once a month anyway, I can’t help you.” I was really turned off and upset.
I then called Penn Medicine to ask for Dr. Kevin Leahy who is listed here. He apparently does not deal or know about ES from what I was told. The receptionist was nice enough to put me on hold and find out if anyone else is familiar with ES. She made me an appointment with Dr. Karthik Rajasekaran next week super quickly. He is a head & neck surgeon in Otorhinolaryngology department and I was told he is familiar with ES. He seems extremely experienced in many different conditions and surgeries so I am feeling hopeful he can at least guide me in the right direction. I do know that Dr. Raj Dedhia is at Penn and if this appointment doesn’t go as planned I will see if it’s possible to see Dr. Dedhia as I’ve read about him on this forum. I’m at least hoping Dr. Rajasekaran can provide me some insight as to what could be going on.
I have severe health anxiety and this has been taking over my life trying to figure out what is wrong. I’m in pain and I know my body. I truly know something doesn’t feel right. From personal experience it’s really difficult to find caring doctors who actually listen and don’t dismiss real symptoms patients are experiencing.
My questions are:
- What kind of imaging/scans should I be asking for specifically?
- Has anyone ever heard of or know anything about Dr. Karthik Rajasekaran at Penn?
- Do my current symptoms sound similar to anyone else’s? (I do know symptoms can vary from person to person)
- Would something like physical therapy help this or make it worse? Is surgery truly the only solution for ES?
- Does anyone else have both TMJD and ES?
Think that’s all my questions for now but if you have read this far thank you so much. Was very relieved to stumble upon this community and all the resources, advice and support or can provide.