Hello all. Very grateful to have found this resource and have been busy reading posts this afternoon. I am a 29-year-old woman living in Colorado in the US.
Today my ENT suggested the pain I have been having for months may be due to Eagle Syndrome. I have been seeing Dr Hepworth (I see on this site he is the only recommended doctor for Eagle Syndrome in my state, so I feel very lucky!) since mid to late March. First, I thought it was tonsillitis (I have a very, very large right tonsil – more on that later.) I was treated by a teledoc with amoxicillin, received some relief, but symptoms returned within about a week. Was then prescribed steroids by a second teledoc but my gut was telling me that I needed to see a specialist. My boyfriend has been seeing Dr. Hepworth for years with great success and recommended I make an appointment with him. Because of the Covid crisis and lockdown, he had a lot of canceled appointments and I got in to see him right away, which was awesome.
Dr. Hepworth initially found my right submandibular salivary gland was swollen and that perhaps I had an infection in my gland that was not treated by amoxicillin. I was prescribed a round of Cipro, which did nothing, and he recommended I suck on lime wedges and drink a lot of water. After the Cipro course, I got in to see the NP at his clinic and she prescribed me pilocarpine (produces saliva) and ordered a CT scan of my head and neck to rule out salivary stones or tumors. Because I have crappy insurance, it took forever to get my scan and then see Dr. Hepworth again, but I finally did today.
Today after reviewing my CT scan he said my symptoms and scan suggest I have Eagle Syndrome. He showed me on the scan where my right styloid process (bones I didn’t even know I had before this!) is longer than the other one. My salivary glands are normal and the scan showed no stones or blockages. He recommended a vascular ultrasound of my neck and I will hopefully be seeing Dr. Hepworth again in three weeks to go over the results of that. He also prescribed me one more antibiotic today (minocylcen) to definitively rule out infection of my tonsil or my gland. He told me to stop taking pilocarpine, as it’s likely not helping me at all.
My symptoms have been ongoing since mid-March without much relief at all. Some days all I can do is sit with a heating pad on my face/neck/shoulder. The worst pain is in my neck, mostly toward the front and side, along my jawline on my right side into my right ear at times. More often, it radiates into my shoulder and even my arm, causing my arm to feel weak and sometimes a little numb. From the beginning I have sometimes felt like I have something caught in my throat, almost like when you are holding in a cry and have a lump in your throat. It’s also on the right side, and I noticed the steroids I took for a few days made this symptom more pronounced. My right tonsil is HUGE and has been for a while. It doesn’t seem infected at all, doesn’t hurt. I don’t have pain swallowing although talking and eating sometimes make my pain worse. Turning my head doesn’t seem to do much to me, which I see is a common symptom of ES. Unrelated to the pain I’ve been having lately, I was also diagnosed with migraine headaches about five years ago. They are infrequent (1-2 a month maybe) but I would describe them as a stabbing pain behind my right eye and into the right side of my head. I take a triptan for these when they come on and that usually works. Now I’m wondering if these headaches could also be linked to ES.
The pain I am having is constant and pretty terrible. Reading about ES, it does feel like nerve pain. Right now I am taking 1800 mg of ibuprofen everyday and 50 mg Tramadol 1-2 times a day. Sometimes marijuana either eaten or smoked but I’ve cut back on that as well. I honestly can’t tell if heat (either heating pad, baths or showers) even works, but it seems to help my shoulder pain at times. Ibuprofen takes the edge off, but Tramadol is really the only thing that knocks it back enough for me to feel somewhat normal. Even when the pain disappears, it’s hard to describe, but feels like there’s a lump in my throat or just something “wrong” with the general area of my jaw/neck/base of tongue/mouth.
Dr. Hepworth said a “less discerning ENT” would likely just have my tonsils removed, but he didn’t think that would necessarily help me. Deep down in my gut I not feel it is a problem with my tonsils. Even though they are large, I have rarely ever been sick with strep or tonsillitis, which is why mine were never removed. I was very scared going to my appointment today wondering if I would need a slew of other tests or the possibility that I may have a tumor or something. I have to say I am feeling a bit relieved to have a potential diagnosis and a doctor who I have faith in, who is taking me seriously. He did discuss the ES surgery with me today, and it did not scare me that much. I’m more scared of living with this pain forever!
Does anyone with ES relate to these symptoms? Any recommendations on what to do for relief? Any other tests I should ask about, or questions I should ask at my next doctor’s visit? If you have had the surgery, I’d be curious to hear more about your experience. I’d appreciate advice, tips, commiseration, anything, as this is still a somewhat new situation for me. Thank you all in advance.