My ES Story

Hi all, I am a new user to this forum, but not new to the forum. I was just diagnosed with ES, yesterday, and couldn’t be more happier to finally have a diagnosis. My pain and strange neurological symptoms started in September 2022. I awoke one morning with visual disturbances, that was later determined to be oscillopsia, and pain behind my right eye. That was a Friday morning. I went to an eye doctor the following Monday and was checked for optic neuritis, all was good. The oscillopsia was followed by pain in the jaw, face, and ear, all on the right side. The oscillopsia lasted about 6 weeks, but the pain never subsided. During that time I saw my PCP, a neurologist, and a neurosurgeon. My PCP diagnosed me with migraines but ordered an MRI of my head, just in case. I pushed for an MRI of my neck. The neurologist thought I had a mild form of meningitis that cleared on its own (didn’t get in to see him until 10 weeks after the initial symptoms). The MRI of my head was fine, but the MRI of my neck revealed severe spinal stenosis, foraminal narrowing, bone spurs, and arthritis at C5-C6 and moderate at C4-C5. When I asked the neurosurgeon about the pain in my ear/face/jaw, he reassured me that my neck could not be causing the pain. So, I went on with life, still researching the pain I was feeling.

In April of 2023, I had another flair, for lack of a better word. I scheduled an appointment with a TMJ specialist, thinking that was maybe the cause. However, I never fully thought it was TMJ – it was one-sided pain that seemingly happened over night and I never clenched or grinded my teeth in my previous 44 years of life. Anyway, after meeting with TMJ specialist, I didn’t pursue him any further. He didn’t make me feel comfortable and wasn’t reassuring that TMJ was causing my symptoms. Plus, the device he was going to fit with me with was going to cost $4k and insurance wouldn’t cover any of it. I had another flair in August of 2023 and that’s when I had my dentist fit me with a $400 mouth piece, expensive, but much more reasonable. And, just to reiterate, I had (have) constant pain, the flairs were just times where the intensity ramped up. Anyway, I started wearing the mouth piece every night starting in October of 2023. However, the pain was getting worse. I also developed vocal nodes over the summer (2023), which may or may not be related to my RA (I also have Hashimoto’s and Psoriasis).

At the end of November, 2023, I started physical therapy (yes, physical therapy) for the vocal nodes. I figured it couldn’t hurt, I thought the PT might actually help my neck, still thinking my neck might be causing the pain in my ear/jaw/face. Then, during the first part of December, while doing PT, I had one of the worst pains I’ve ever felt. It took me down for 2 weeks. I couldn’t do much of anything. I tried about every medication in my cabinet and nothing seemed to help. I scheduled another appointment with my PCP, who again said it was a migraine (I argued with her this time, though she wasn’t hearing me – I decided I needed a new PCP that day). I also scheduled an appointment with my ENT (the one treating my nodes) and my neurosurgeon. The ENT doc said the pain was more than likely being caused by my jaw, even though I pointed out that I had been wearing the mouth piece (at that time, for 3.5 months), the pain was unilateral, and that the pain, basically, happened overnight. I also had discovered an extremely tender spot at the top of my neck, under my ear that I pointed out to him (I later learned it was the tip of the styloid process). He said it was my spine. The next week I saw my neurosurgeon and he ordered another MRI. He said nothing had changed from the MRI I had a year before. He told me that he could do an amazing surgery to fix my neck, but it might not relieve my pain in my face/jaw/ear. So, he recommended a steroid injection to see if I could get any relief from the pain. I didn’t get any relief from the injection.

In between the neurosurgeon and the ENT, I finally put in the correct combination of terms into Google and learned of Eagle Syndrome. I knew immediately that’s what I had. I asked the neurosurgeon about it. He had heard of it and said it was a good possibility. He referred me to someone for ES, but when the nurse called to schedule my appointment, she told me that doctor doesn’t treat for ES. That’s when I found this forum and the one and only doctor in Arkansas that treats ES. I saw him yesterday. He said I definitely have ES and that my left styloid process is actually longer than my right (all my symptoms are on my right side), but I have more calcification of my stylohyoid ligament on my right side. So, he scheduled me for a bilateral removal of the styloid process and stylohyoid ligaments, intraorally. I have read so much from this forum since January, which includes reading about surgery intraorally and I’m not sure that’s the route I want to go. However, I also don’t want to push the surgery off trying to find another out-of-state doctor that will take me. Ugh, glad to finally have validation/confirmation, but also now comes the anxiety/stress of figuring out the surgery – though I am 100% looking forward to symptom relief.

Any surgery advice is welcome and thanks for reading my story :slight_smile:


Hi and welcome to the site!
So pleased for you that you’ve got a diagnosis, and that Dr Suen is willing to do the surgery. I had a look to see mentions of him in the past discussions but not much has been said- all the doctors on our list have done successful surgery, but some were suggested a while ago so could explain why there’s no recent discussions.
Re the surgery, we have info in the Newbies Guide Section about surgery, there’s ideas of questions to ask a doctor and also a link to a surgery shopping list which a member wrote, here’s a link:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Having intra-oral surgery is a tougher recovery than external surgery, and is usually harder for the doctor to remove as much of the styloid, because access and visibility is less, you’ve obvs read up on that. In addition having both styloids done at the same time is also a tougher recovery and there can be alot of swelling; I would be wary of having both sides done at the same time intra-orally as the swelling would be quite tough; if you want to have surgery this way I would definitely talk to Dr Suen about how many of these he’s performed, how successful they were, and what measures he takes to help with the swelling. (Drains and or steroids are used by some doctors) Although it’s nice to get surgery over and done with if both sides are symptomatic!
It’s a tricky decision as to whether to go with Dr Suen or whether you travel elsewhere for surgery- some doctors do telehealth appts so you wouldn’t have to travel for initial appts at least, it might be worth considering getting a second opinion, depending on how many surgeries Dr Suen has done?

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