Hi y'all!

I just found this forum today, and I could not be happier to be a part of this community. I have felt very alone on my journey with (possibly) Eagle’s syndrome, and to find a place to communicate with other’s who understand is such a Godsend. I have already read so many of y’all’s posts, and I have learned so much and been so encouraged. So I want to tell y’all a little about me and ask for your opinions and advice.

In 2018 I endured a concussion while playing on my high school basketball team. After the concussion, I started to have problems with passing out, dizziness, and weakness. But after a few months those symptoms went away until about a year ago, December of 2021. At that time I started passing out again, accompanied by fits of unexplainable dizziness, confusion, weakness, high heart rate, and high blood pressure. These spells seemed to come on randomly, but after several months I started to notice that they were more common when sitting in class or church, when my head was turned to one side or the other (generally looking to the right) for long periods of time. I first went to my PCP to have bloodwork, to ensure that everything looked good on that end. When everything came back normal, I then was referred to a cardiologist due to my high HR and BP. The cardiologist put a monitor on me, did an echo, an EKG, and a stress test. All the tests came back normal (except for some tachycardia, which I could have told them without a monitor). I wasn’t sure what other options to explore and was left feeling very helpless. But as a dental hygiene student, one of our supervising dentists was doing an exam on me one day and after looking at my medical history and my x-rays, he pointed out my elongated styloid process and asked if I had looked into Eagle’s Syndrome. I had never heard of it before, so I started researching and my primary dentist referred me to an ENT. The ENT initially did not take me seriously and basically made me feel like I was a silly little girl who gets dizzy sometimes. He told me that I need to go to physical therapy for my dizziness. I showed him my X-rays and he told me that he didn’t know how to read them. I don’t think he even knew what Eagle’s syndrome was, because I had to explain to him the entire concept. He did some tests on me to test my balance and hearing, both of which were completely fine. I finally convinced him to take me somewhat seriously, so he ordered a CT scan for me. The CT scan showed that both styloid processes are elongated, but showed no obvious signs of obstruction to the arteries or nerves. At my second appointment to go over the CT results he had obviously done some research because he knew at least a little bit about the condition. He asked me if I had any throat or face pain, and I didn’t at that time. He said that because of that he didn’t believe it was ES and wants me to follow up with a neurologist to rule out migraines. The neurologists around me are way overbooked and I haven’t been able to get in with one yet. But in the meantime I have developed more symptoms. In the last few months I have had sharp, stabbing pain behind/below my ear, earaches, chronic sore throat, tonsil stones (don’t know if those are related, but I have never had a tonsil stone until the last couple months and now I have them all the time), and at one point I was turning my head and I heard a popping that sounded like a bone, but it was in the soft tissue of my neck where there shouldn’t be any bones. And in the last couple of days, I have started to get stabbing headaches in my right occipital region whenever I turn my head sharply to the right. The pain is so bad that I cry out every time without intending to. It also feels like there is a nerve pinched in my back/shoulders, more specifically my trapezius muscle. I’ve always had chronic headaches and back/neck pain, but it has been so intense the last day or so that I have been researching trying to figure out what to do. One of the conditions that I came across that may cause this pain is occipital neuralgia, which is where the trauma or compression to the nerves at C2 or C3 level. I am wondering if they may be compressed by the styloid process?

I am reaching out on this forum because I need help. I feel like I am the only one advocating for myself and I don’t even know where to start. I have done a lot of research and all of my symptoms can be explained by Eagle’s Syndrome, but I also don’t want to excuse any other possibilities. I understand that the surgical removal of the styloid process is high risk, so I want to eliminate any other possible conditions before even attempting that surgery. However, I don’t have a good doctor to help me in this process and I don’t have the financial means to go to a specialist until I am completely certain ES is the issue. Where should I even start on this journey?

I am getting very discouraged. There have been so many doors shut in my face and a lack of answers is even harder than a difficult diagnosis. It’s hard to even explain to my family and friends how much these symptoms affect me. It’s affecting me because I no longer have the confidence to do things I love because I never know when I may pass out or experience symptoms. I would appreciate anyone who could give me some advice :heart:

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Hi & welcome to the site!
So sorry that you’ve been dismissed & are discouraged, but I think it sounds like you did a great job of advocating for yourself with your ENT, so should give yourself a pat on the back!
Firstly the CT you had done wouldn’t have shown any nerve compressions as nerves can’t be seen on a CT, so don’t feel bad about that. If you notice the dizziness etc is worse when your head’s turned, then it sounds like that’s when you potentially get vascular compression, and unless a CT with contrast was done with your head in that position, it possibly wouldn’t show any compression.
There’s lots of info about which nerves can be affected by ES & symptoms members have had in the Newbies Guide Section- for example the Glossopharyngeal nerve is commonly irritated & that can cause stabbing pain in the throat like you’ve been experiencing, & possibly ear pain. The Trigeminal Nerve has 3 branches & can cause pain along the jaw & around the ear, same with the Facial nerve. The Vagus nerve also gets irritated, & that can cause tachycardia/ arrhythmias, blood pressure issues, anxiety…The dizziness can be vascular or otherwise caused by the Vestibular Cochlear nerve.
You mentioned Occipital Neuralgia; I did comment on another post, I’m not sure if it could be compressed by the styloid as it originates around the C2 & C3 vertebrae but it does seem to be a common symptom- maybe the muscles in the neck get tense because of ES pain & it squeezes the nerve?
There are ‘Two minute Neuroscience’ clips on YouTube for all the Cranial Nerves so you can see their pathways if you’re interested? & here’s a link to a video about the Occipital Nerve:
Occipital nerves: Origin, course and function | Kenhub
Although you say you’ve done lots of research, so you probably already know this!
Have you had your neck checked out for any other injury after your basketball accident?
I’d suggest seeing one of the doctors on our list who have experience of ES if you can, at least then you’ll be talking to someone who does understand it! Here’s a link to the list, you can use the search function to look up doctors on here & see when members saw the, for example a couple of members have seen/ had surgery with Dr Nathan Hales recently:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
No doctor will say that surgery will eliminate all the symptoms, but if other conditions have been ruled out and your quality of life is being badly affected, then it’s worth pursuing…
I hope that you can get somewhere with one of the doctors!