Brand New! Advice appreciated for my next steps!

Hello all! I cannot believe it- discovering this page and learning about ES has answered so many questions and fears that I have been fighting for the past decade of my life!! If it weren’t for me feeling around in odd spots around my tonsils this week, I would have never discovered my styloid trying to poke through and then a quick search for bones in the tonsils led me to discover this page and ES. I had never come across it with all of my research before- and I’m so relieved.

For the past 10 years I have thought I had some sort of slow-growing cancer. I have dealt with vision changes (being out in the sun for a few minutes adds a weird water surface texture over everything), constant muscle twitching down the sides of my abdomen and most areas that have lymph nodes, pain in the head/neck/back, feeling as though my circulation system is being constricted, tightness/fullness in my neck and head, constant ringing in ears, random areas on my back/face/neck that tingle, buzz, and have numbness, fast heart rate for the first 5 years, palpitations… ugh, the list goes on and on. I’ve felt lots of nodules (which doctors say feel like normal lymph nodes, but I feel ALL of them and they feel swollen to me), especially in my head/neck/collarbone areas, they used to painfully twitch and have sharp shooting electrical pulses, too.

Sadly, I had given up on trying to explain myself and find help. Doctors wrote me off and said everything was normal. I knew it wasn’t but what can you do? I finally broke down this year and bought a package of CT scans from a full body scan place out of good measure. They found a 3cm nodule on my thyroid and I thought maybe that was my problem and hoped it wasn’t a thyroid cancer that had spread. Well thankfully, the biopsy came back 2 weeks ago and it was negative.

Figured my body just hated the nodule and I was doomed to have these symptoms forever I guess. Until this week, when I felt down all around my tonsils where i normally don’t. The ringing in my ears has been getting worse, as well as neck pain especially when my head turns. Low and behold, there felt like a crayon sticking out from my lower tonsil area on the side that’s the worst for me. The other side was much smaller, but still palpable. I couldn’t believe it! Had no clue about styloid elongation and now I KNOW this is it!! I’m excited and nervous but happy all at the same time. Finally an answer… and maybe hope for relief?

I called my doctor, got a referral to a local ENT place in Tulsa. I can travel, and am thinking Dr. Hepworth would be a short flight for me and takes my insurance. Can I get some feedback on the next steps I should take to get this ball rolling as efficiently as possible?

I’m assuming this ENT will want imaging. Should I ask for anything in particular? I’m thinking CT with contrast, correct? Should I try to skip the imaging and just get the diagnosis from the palpable styloid and then just get a referral to Hepworth? My insurance is a PPO and doesn’t require referrals- can I just go straight to Hepworth and just have him do the imaging he needs?

I basically don’t want to have to repeat testing if I am going to end up going somwhere else anyway or if they don’t get the right thing in the first place. I have kids with brain abnormalities so I’m used to dealing with doctors and specialists and getting referrals. Just trying to cut down on a lot of the middleman stuff.

Any help or suggestions is appreciated!

1 Like

Hi Injinx!

Welcome! I’m so glad you found us. I’m sorry you have children w/ handicaps. That is challenging. I have great admiration for your attitude toward caring for them.

Here is some information that will be useful to you & might be overkill:
Eagle Syndrome is defined as 1) elongation of the styloid process(es) OR 2) calcification of the stylohyoid ligament(s) OR 3) a combination of 1 & 2. The type of doctor that usually treats ES is a skull-based ENT surgeon, neurosurgeon or maxillofacial surgeon. These doctors are often cancer specialists. Understanding the type & thoroughness of a doctor’s surgical approach is important. We recommend the external (vs. intraoral) approach as the styloid can be removed back to the skull base & the stylohyoid ligaments, if calcified, can be removed from styloid tips to hyoid bone which provides the best long-term recovery from ES symptoms. Nerves & vascular tissues can also be better monitored via the external approach. A CT scan is the best way to diagnose ES. Your CT needs to show the area between your hyoid bone & skull base focusing on the styloid processes & stylohyoid ligaments. If you have calcification on your stylohyoid ligaments, that will also show up but the ligaments themselves will be invisible - only the calcified sections can be seen.

The symptoms of ES are caused by irritation of up to 6 cranial nerves that “live” in your neck in the same area as the styloid processes & stylohyoid ligaments. Elongation of the styloid(s) &/or calcification of the stylohyoid ligaments can cause irritation to these nerves. Alone each nerve when “upset” can create painful & sometimes scary symptoms. When more than one is irritated the symptoms caused can be downright debilitating. Additionally, vascular compression of the internal carotid artery &/or jugular vein can occur which creates other miserable & concerning symptoms such as migraines, visual changes, heart & blood pressure issues & intracranial hypertension (high blood pressure inside the skull). Obviously, the solution for recovery is to remove the offending bones/ligaments so the nerves &/or vascular tissues can recover. There is a series of YouTube videos called Two Minute Neuroscience . Each cranial nerve is featured in a two-minute video w/ explanation as to location, function & dysfunction of the nerve. It would be good for you to watch them. These are the nerves affected by ES: vagus, facial, glossopharyngeal, hypoglossal, trigeminal & accessory. Hopefully the information you receive will help you understand the source of some/most of your symptoms.

As far as your questions regarding scans go, I would get an appt. w/ Dr. Hepworth & find out what type(s) of scans he wants you to have before you see him rather than “shooting from the hip” & getting something unnecessary. It is important for him to know that you’re traveling from out of state as he generally refers his patients who have vascular ES symptoms to a vascular surgeon in Denver for a vascular study to give him information as to the level of vascular compression before he will do surgery. It would be nice if you could combine appts.

Others who see Dr. Hepworth may have additional comments.

1 Like