New-ish here and ready to find answers!

[jaylaeb]

Hello everyone!

As the title says, I am “new-ish” to this forum. I actually joined a couple years back, but several major life changes (both good and bad) came my way soon after, and my ES journey took a back seat. I finally feel like I have my feet back underneath me and I am ready to focus on my health once again. I would like to introduce myself and tell my story!

I am a 24yo female, and I have been having issues with my health ever since 2018 when I received a concussion from a blow to my right temple in a basketball game. After recovering from my concussion I began passing out and experiencing other symptoms (dizziness, weakness, etc). We first checked my blood glucose during these spells, but all was well with that. We ran all sorts of bloodwork, which also showed nothing abnormal. I then had a CT scan, where nothing was found to be out of the ordinary. From then on I put up with my symptoms as best as I could until 2021, when I passed out again while on a treadmill at the gym. Once again, I had bloodwork done. When those results were normal I went to a cardiologist, who ran nearly every test, only to tell me that I have tachycardia but the cause is unknown. They referred me to a neurologist, who had me get a new CT scan. He suspected that I was having petit mal seizures and prescribed epilepsy medicine. Now, I am familiar with petit mal seizures, and I understand that most who have them do not realize what is happening, but I knew in my gut that it was not the right diagnosis for me. Finally, a dentist friend looked at a panoramic x-ray of mine suggested that I look into Eagle’s Syndrome, due to my long styloid process, specifically on my right side. As a dental hygienist, I devoured all the info I could find on it, and everything seemed to line up. I was so thrilled to finally have a possible cause and cure for the symptoms that I was experiencing. Another dentist referred me to an ENT, but he was very demeaning and treated me like a silly little girl who was just “dizzy” (although he tested me for vertigo and it was normal). He told me that since my throat wasn’t sore, it couldn’t be Eagle’s Syndrome. At this point, I was feeling defeated and not sure where to go, and then my 16yo brother passed away in a car accident. For obvious reasons, I let my health fall to the way side for quite a while after that.

Now, in 2026, I have since gotten married and had a baby! But new symptoms have emerged, and while they are manageable, having a baby makes everything seem more serious. From my own research, the symptoms I previously had lead me to believe that I have the vascular variant of ES, which scares me as I know that particular variant is known to cause strokes. I have a sweet little daughter to care for and I cannot have a stroke for many reasons, but especially for my daughter and husband’s sake. So, I have scheduled an appointment with Dr. Teresa Chan-Leveno in Dallas. I was beyond impressed with the receptionist that I spoke with at her office. By far the most kind, helpful, and compassionate front office worker I have talked to on this journey. But the soonest they can get me in is May, so I may look into other doctors if I can get in sooner elsewhere, although I know that is not likely. However, I want to get the ball rolling as soon as possible, as we want to have children close together but I know that I need to follow up with this before having another baby/becoming pregnant.

I know that was a long story, and if anyone made it through the whole thing, thank you! I know I don’t have to share that much information, but this is not something that I talk about in my daily life and it is nice to share it once in a while. I’m going to list my symptoms below for y’all to look at and tell me if they seem consistent with ES. Some of them may be completely unrelated and I am so sorry for any tmi!

My most recent symptoms have been more pain related than they used to be. Does the presentation of ES ever change from the vascular variant to the nerve? It’s been a while since I have done my in-depth research and I need to brush up on the terminology and concepts, but I have been wondering that. I am less “dizzy” these days, but have more pain, so I have been curious about that. If anyone knows anything about that I would be very happy to hear your knowledge! Thank you in advance!

Symptoms:

• Dizziness

• Fainting

• Full body weakness

• Sharp pain in neck

• Feels like something is stuck in my throat

• Sore throat

• Tonsil stones

• Stabbing pain in right occipital region when turning head to the right *

• High Bp (only during dizzy spells)

• High hr

• Ear aches

• Confusion

• Constipation (so sorry, tmi)

• Tinnitus

• Thumping in ear

• Can’t turn head to right some days

• Pain in esophagus when swallowing

• Right hand/fingers twitching or shaking involuntarily

• “Pressure” in right side neck when looking downward

• Popping in right neck when turning head to left (not bone popping. Feels like a rubber band popping in my neck)

• Sore right side neck

• Memory loss (maybe just “mom brain” lol)

• Right side neck muscle spasms

• Right ear tinnitus

As I said earlier, thank you to everyone who takes the time to read this. I’m very thankful for this forum. It has already been so helpful to me!

[Jules]

I’m sorry for the loss of your brother, and that you were dismissed years ago! And of course you want to be as healthy as you can be with your little girl to look after! We’ve had several members who’ve started ES symptoms or had symptoms worsen during or after a pregnancy; our theory is that as ligaments loosen due to the hormones, to make it easier to give birth, that maybe this shifts the structures of the neck a little too, & so can alter what the styloids are compressing or irritating, so this could explain why your symptoms have changed…
I agree that you could well have vascular ES; carotid artery compression can cause the fainting spells, and dizziness. But some of your symptoms sound like they could be from internal jugular vein compression too- tinnitus, especially thumping or whooshing in time with your heartbeat (pulsatile tinnitus) can be a symptom of that, as well as dizziness/ off balance feeling, and brain fog.
The vagus nerve is also often affected, which can cause heart arrythmias, (this can be due to irritation carotid sinus too), also increased BP, & digestive symptoms. The vagus nerve is within the carotid sheath along with the carotid artery and the IJV so it’s possible all are affected.
Pain in your neck, throat, ear ache, swallowing pain or difficulty, pain turning head etc are the more ‘classic’ ES symptoms & are often nerve related as you’ve said. There’s more detailed info in this section about symptoms & possible causes if you’ve not seen it:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Symptoms can definitely change with time, your last CT was a while ago, so the styloids could have grown since then as well. If you’re able to get a new CT, preferably with contrast, that would be helpful? Sometimes these can be done with your head in different positions, so if you could get one done in any position which makes your symptoms worse that would be great, but not to worry if not. You would ideally need the contrast to be timed to capture arteries and veins as you could have both affected.
Given that it does sound like it’s vascular ES, it might be an idea to see a doctor experienced with that if you don’t want to wait for Dr Chan-Leveno, although it might mean travelling, and some of the best VES doctors have long waits too, but it’s worth it to make sure you get the surgery done properly… So the VES doctors that we know most about are Dr Nakaji in AZ, Dr Hepworth in CO, Dr Costantino in NY and Dr Cognetti in PA. Also Dr. Babu Welch at UT Southwestern, 5303 Harry Hines Blvd 7th floor, Dallas, has performed surgery for VES but only for one member that we know of. Dr Osborne in CA has done lots of successful surgeries too, not necessarily for VES but those with VES who have had surgery have had good outcomes- he doesn’t take insurance so cost can be an issue, but he does have a short waiting list as he does these surgeries all the time, whereas some of the other doctors do cancer surgeries as well…
Here’s a link to the doctors list:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I hope this is helpful and that you can get somewhere with other doctors if that’s what you decide!