New ES Patient

Hello, ES family. I have a long story that I want to vent about. Feel free to leave a comment with your words of encouragement, advice, and things to keep in mind as I await my consult with the surgeon.

In the early summer of 2019, I became sick with what I thought was a typical upper respiratory infection. I went to my local urgent care center as I woke up on a Sunday morning sick as a dog. I presented with a sore throat, and tenderness in the front of my neck. The physician prescribed an antibiotic even though I tested negative on a rapid strep test.

Little did I know, this was the beginning of a long, agonizing journey that ultimately led to my ES diagnosis just recently on March 3, 2021.

About three days with no success taking that prescription, I went to the ER with visible neck swelling, and pain like I had never experienced before. Assuming it was my thyroid gland, I sought treatment for pain management. During my time in the ER that night, I had a CT with contrast which showed no abscesses or other common ailments that could explain my pain. They diagnosed me with having tonsillitis and that is how I got my foot in the door with an ENT specialist. Interestingly enough, I had my palatine tonsils removed in childhood, which is when I learned of these things called lingual tonsils that lay on the back of our tongues. Some people never know they will have these secondary set of tonsils unless they become inflamed/infected like mine did.

With my time at this ENT’s office I underwent several blood tests, and nasal scopes to monitor the size and health of these lingual tonsils. The physician treated me with many round of medications in hopes of ruling out other illnesses. We were not successful in treating the tonsillar hypertrophy. As time went on, symptoms increased. The ‘foreign object in my throat’ feeling got worse, and I suddenly was dealing with an annoying case of halitosis, along with a slew of other “random” issues.

Meanwhile, I am also a patient with a neurologist to monitor my migraines. I had been a migraine suffer all of my adult life, but recently, I noticed an uptick in frequency and severity which led to my decision to pursue prescription medication. Also in 2019, my migraine attacks shifted from your typical debilitating experience to something much more scary and concerning that had me convinced I was having TIA’s. From loss of speech, to vision, to lack of mobility in left side arm and legs, light headedness, and extreme dizziness/nausea, the only thing that I didn’t have was a droopy face. This type of attack has happened to me twice to date. Once while I was at work, and another time while driving home from work on the highway. Both times I had to have someone come pick me up and take me to the ER. CT’s came back “norma”–meaning no signs of stroke.

I currently take a monthly injection to manage my migraines that has worked beautifully this last year up until recently. My migraines are back pretty often this past month (feb-mar 2021).

Back to my ENT experience–After about 1.5 years of no answers she concludes that it would likely be beneficial that I talk about a lingual tonsillectomy. This particular surgery is so intricate and risky, no one on staff with this hospital was confident enough to perform it themselves, so then came my referral to what is known as the “big dogs” in town–KU Med.

She told me that this particular surgeon will likely be underwhelmed with my case as he typically operates on cancer patients in the Head & Neck department but he is skilled, wise, and equipped with the latest gadgets that surely will aide in my prognosis. So, on I went to my first visit at KU med back in January 2021. He said there would be no guarantee the lingual tonsillectomy would cure my issues, but he is willing to do it if I want to. He said given the timing of Covid-19, all elective surgeries are not taking priority so if we do this it will be several months which I was perfectly okay with as I needed some time to think this through.

I actually canceled my follow-up appointment that was scheduled in February to give him my answer out of fear and pushed it out again to the end of March to buy me more time.

Meanwhile, all symptoms have worsened in my neck and throat. Stiff neck, tinnitus in my left year, “thick” neck, hard to swallow, lump in throat feeling, etc. But none of these are still severe in my opinion. Very inconvenient, and annoying, but not severely painful.

Flash forward to March 3, 2021 I had a routine dental visit where they performed a panoramic x-ray and to their surprise located bilateral, calcified styloid processes (about 4 cm each). My dentist forwarded these images to my surgeon at KU Med, and I began messaging my nurse assigned to my case to let her know of this new discovery. Never hearing of this syndrome before, of course, I am Googling the heck out of this and discover this website and my oh my has this been SO soothing to my nerves.

While I have been waiting to see my doctor to discuss not only the tonsillectomy, but now a bilateral styloidectomy, I have noticed a SIGNIFICANT increase in my pain in my neck and throat. On Sunday I went to the ER after working out because the strain from weight lifting made me feel like something was breaking my face. The stabbing jaw pain, the pressure my head and neck felt, I had goiter again, and oh my lord, just excruciating pain. I couldn’t handle it so I sought treatment at KU Med ER where I had another CT w/ contrast that confirmed ES again, as well as tonsillitis, and many thyroid nodules.

The nurse moved my appointment up from the 29th of March to the 22nd. I am on a steroid and oxy until I see the doc. I don’t know what to think but it is becoming more and more clear that surgery is likely in my near future. I don’t know what to expect–I work out 6 days a week. I live an active lifestyle. I’m scared.

I will be sure to update you all one I speak to him in just a few short days. Let me know what you think?! Do you have a similar story to mine?

Hi Wmanford08,

Though I didn’t have the same symptoms you have, I did have a similar experience w/ exercise exacerbating my ES symptoms. I was blessed to be diagnosed w/in a few months of the time my pain symptoms appeared. I had swallowing trouble for a couple of years prior which I didn’t relate to ES until sometime after my surgeries. These included two incidents of choking that required the Heimlich maneuver to restore my ability to breathe - SCARY!!.

At the time I was diagnosed w/ bilateral ES, I was a long distance runner, cyclist & had a personal trainer so was at the gym several days/week. When I’d do hard anaerobic exercises like rope slamming that utilized a lot of neck & upper body muscles, my blood pressure would drop, my heart would race wildly, & I would feel like I was going to pass out. Prior to this time, I could do this type of exercise w/o incident. I would also get this feeling in the roof of my mouth & upper gums like I’d just poured scalding water over them, & they were badly burned. It would last a couple of hrs then subside. Two weeks post op after my first surgery, I restarted an orthopedic Pilates class I’d been taking prior to surgery to help treat my symptoms. Six weeks after my first surgery, I ran in a 15k event & quickly realized my body wasn’t ready to jump back into that level of exercise as my throat felt like it was swelling closed over the last half of the event. SCARY again! Scroll forward 6 months to the week before my second surgery was scheduled. I was cycling to the gym one day & must have blacked out momentarily. My bike & I had an unfortunate accident that landed me in the ER semi-conscious w/ a moderate concussion & a messed up face. This pushed my second surgery out by 3.5 months & that was more devastating to me than the bike accident. Additionally, I ended up w/ Meniére’s Disease from my head injury. It’s my guess that my remaining styloid had gotten long enough that when my head was in the position in which I held it for cycling, it compressed some major vascular tissue & that’s what caused me to lose consciousness & lose control of my bike. That’s just a guess though as I have no memory of the accident.

The fact you have debilitating migraines, stroke-like symptoms/TIAs & other vascular symptoms suggests that your styloids may either be pressing on your internal carotid artery(ies) or jugular vein(s). Your symptoms indicate it could possibly be both (which is very rare). I am also going to speculate that you don’t need to have the lingual tonsils removed as elongated styloids irritate up to six of our cranial nerves, some of which affect the tongue & which can cause tongue dysfunction. It is possible that your lingual tonsils are reacting to nerve irritation, & I would recommend getting your styloids removed first then re-evaluating your tonsil situation once you’re healed from your ES surgery(ies) especially since it sounds like a very delicate procedure which you may not need in the end.

I think you would be wise to print off some papers with information about ES and its symptoms to take with you to your appointment in case the ENT surgeon isn’t familiar with it. Because ES is rare, even some very seasoned ENT & head/neck surgeons don’t know much about it. The following article is excellent in its description of ES symptoms & their possible causes, but it promotes prolotherapy which we are not in favor of at this time: Eagle Syndrome Treatment – A Different non-surgical approach – Caring Medical Florida. I’m only sending the link because of how thoroughly the article covers ES symptoms. We do have links to peer reviewed ES research articles (tab under the General category on our home page) which you can also utilize.

I would recommend that you tone down your workouts - especially any aspects where you use your neck & thoracic area until your styloids have been removed. Putting pressure into your thoracic cavity increases internal neck pressure & muscle strain which excites your already irritated nerves even more & then you get symptoms which send you to the ER. You will be able to get back to your excercize & weight lifting once you’ve recovered from surgery, but it will be a gradual process. Right now your body is asking for a rest. I know how hearing this news feels. I’ve been there. I’m happy to report that I have been able to fully return to what I used to do but am getting older now so have had to make some modifications to preserve my joints. I do long distance hiking now instead of running & have stopped being a gym rat. I take a Pilates mat class a couple of days a week to help me stay strong. I’m so thankful that ES surgery gave me my life back.

I hope this information is helpful & not overwhelming. I’ve been where you are.

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I was diagnosed with ES after toothache, suspected salivary gland stone, jaw pain- it showed on the panoramic X-ray I had for all that, & after reading on here about other symptoms- ear pressure neck pain etc it all made sense. But the pain was managed with Amitriptyline, so I decided to not pursue surgery.
I spent all the next summer getting fitter by cycling, 15- 20 miles per day, but started getting vascular ES symptoms (head pressure, headaches in the morning after laying flat, dizziness, off-balance, drunk feeling & some other scary symptoms). The exercise definitely made these worse, & I was diagnosed with a prolapsed disc C5-C6, which I can only guess maybe shifted the bones enough to bring the styloids into contact with the jugular veins? Anyway, I had to stop the cycling, & any strenuous exercise, until both styloids were removed.
I agree with Isaiah that it’s worth looking into this before the lingual tonsils are removed…It might be worth speaking to the nurse beforehand to see if your ENT is familiar with ES before you visit, to save wasting time?

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Thank you so much for sharing your story with me and weighing in on mine. I will tone it down, and do long distance walking for now. :slight_smile:

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Thank you for your input, Jules!