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?