cjeagle ~
One of the nerves often irritated by ES is the Trigeminal nerve. It has 3 main branches but also little tendrils that cover much of the face. As a result, strange eye, ear, cheek, teeth & nose pain or numbness/tingling as well as migraine headaches can be the result of this nerve being unhappy. I suspect you’re experiencing negative stimulation of the TN & that is causing your current symptoms. Getting that remaining styloid removed should help A LOT!!
Hi gr8flgrl777
Being able to feel the styloid process in the throat one of the ways doctors often identify ES prior to a confirming CT scan of the neck - the area between the skull base & hyoid bone. Have you had a CT scan yet to see if you have bilateral ES or just on one side?
Hi Isaiaha,
I had a CT scan prior to diagnosis which was “normal”. Tuesday I am bringing that CT to the ENT that diagnosed me. He explained this is so rare it wouldn’t have been picked up on a CT unless they we looking for/and or heard of ES. 80% of my symptoms are only on the left side.
gr8fulgirl777~
Bear in mind as your ENT discusses your CT scan w/ you that some doctors focus on styloid length in order to diagnose ES. Length is only one factor that can play into ES symptoms. Exaggerated angle/curve, thickness, pointiness of a styloid process in the absence of length can also be diagnosed as ES. Additionally, have him check for calcification on your stylohyoid ligaments. Even partial calcification on those can create symptoms of ES.
Hopefully there are some 3D images of your CT scan. These will be more interesting & informative for you to look at than the CT slices.
Is there a percentage rate of people diagnosed with bilateral vs. one side? He has felt the bony protrusion and the point in my throat. I will copy your message notes above and bring them to the appointment. Thank you VERY much!!
That’s a good question. It seems more people have bilateral ES but sometimes only one side causes symptoms. In many cases of bilateral ES, however, once one side is removed, the second side makes itself known or ramps up whatever symptoms it was already causing. Hopefully you only have it unilaterally! That would be the best case scenario!!
Symptoms of ES are mostly caused by impingement of or irritation of several cranial nerves that run through the area of the neck where the styloids & s-h ligaments are. Each of our cranial nerves innervates or affects a number of areas of our bodies. The vagus nerve is the widest ranging in the symptoms it can cause from throat/vocal function to breathing to heart rate/blood pressure to digestive tract to anxiety levels. Other nerves often affected are the facial nerve, glossopharyngeal & hypoglossal nerves, trigeminal nerve & accessory nerve. There are 12 cranial nerves so half of them can become irritated by ES & that’s why it’s a hard to diagnose syndrome merely based on symptoms. The symptoms can be very wide-ranging & don’t immediately add up to a clear diagnosis & can make a person seem like a hypochondriac. Vascular symptoms generally come from compression of the internal carotid artery (& in rare cases also the external carotid) &/or the jugular vein.
It’s good to take all the information you can to your doctor appts. There are links to many published research articles about ES in our Newbies Guide section or you can Google ES & find articles that way as well. WARNING: Some doctors appreciate patients who do their homework. Others are offended by it or are arrogant & feel they know more than the patient. When it comes to ES, it’s best for you to be able to stand your ground, know the facts & be confident of the possible sources of your symptoms so you can speak to that when you encounter a skeptical doctor. I hope the one you see is compassionate, encouraging & a good listener & helper for you.
Hi Isaiah, I think you’ve hit the nail on the head there. I’m out of hospital now, but whilst I was in I had to have a CT of my head to rule out a bleed. The symptoms I’ve been experiencing recently are exactly what you’ve explained.
cjeagle ~
I’m so glad you didn’t have a bleed of any sort. That would have been very unfortunate, but I’m sure your symptoms were scary enough by themselves.
Have you got an appointment to pursue the ES theory & maybe look at surgery? If not, that would be a worthwhile next step.
I hope your symptoms give you a rest for a bit. No more big scares!
