I’m curious to learn about how you came to learn that you had ES? For me, this has been a very long journey (6+ years), and it was only recently that I learn that I have ES because I ran my CT of bony face report through an AI that flagged ES.
I have been to four/five ENTs, neurologists, eye specialists, and family doctors, and none of them could tell me my symptoms correlate with ES.
I would like to understand what others’ journeys looked like to get to where they understood that it’s ES.
Well done working out what’s causing your symptoms yourself! We are seeing more members who’ve done their own research & sleuthing & have worked out the diagnosis themselves, the internet has been a really useful tool to diagnose a rare condition! (Actually we don’t think that ES is that rare, we believe that it’s more common than doctors are taught, but that it’s just mis- or under diagnosed!)
Personally, I was diagnosed by chance- I had tooth pain but the dentist couldn’t find a reason, then I had a salivary gland stone so was sent to the max-fac clinic for imaging as when the stone passed I still had pain. They did a panoramic x-ray and saw the styloids on there. After I was diagnosed, I found this site & after reading up on here I realised that I had had lots of other symptoms for years without realising what was causing them- for example neck pain, jaw pain & ear pain, which I’d thought might’ve been down to impacted wisdom teeth…
I had a pain in the front of my neck in the thyroid area. Since I had known thyroid nodules, I assumed for several months that’s what was causing my neck pain. However, the couple of nodules I can feel from the outside, didn’t hurt when I poked them so I felt around all over my neck & found a hard lump under the left side of my jaw. It hurt like crazy when I poked it. After seeing a couple of doctors, one referred me to an ENT who suspected ES & sent me for a diagnostic CT scan. The results showed bilateral ES. The doctor who diagnosed me was happy to do my surgery, but I found this forum & learned about different ways surgery was done so got a second opinion. The second opinion doctor had a surgical approach which made more sense to me than the diagnosing doctor so I had him do my surgeries.
As with @Jules, once I was diagnosed & learned the variety of symptoms ES can cause, I realized I’d had other symptoms that pointed to ES as well with my first one being choking on food & when I would take a drink of water, etc.
What was the estimated time frame between when you started noticing pain/discomfort and getting the accurate diagnosis?
For me, if it weren’t for the radiologist in the last scan who noted that I have elongated styloids and the neurologist who thought to prescribe a CT scan of the bony face, I would still not have known what was going on.
Three months only, wow @Isaiah_40_31 ! Mine is going to be a year total on the 13th of January (it’s been a painful and exhausting experience). I appreciate your wealth of knowledge.
I put in AI all my signs & symptoms which are mainly unilateral/ right side (globus /something in throat sensation, choking feeling, feeling of a vise around my throat, all anterior muscles spasming, vocal cord paralysis, voice fry, severe pain while talking, tmj pain, certain head movements cause severe pain, severe stabbing in lower right larynx aspect, unable to stick tongue out and difficulty opening mouth, facial spasms, eyelid droop, severe migraines, sometimes difficulty breathing, etc). AI knew it instantly. I was diagnosed with TMJ /TMD /trigeminal neuralgia and the maxillofacial surgeons kept ignoring my throat issues. I went through 15+ docs including many ENTs.
Also, I found this support group via AI too. It’s a great tool.
Hi there, I need to add my ES was a result of trauma. The AI came up with the possible Dx right away. Note: I forgot to mention the stabbing and tinnitus in the right ear (there’s so much - as all of us have multiple presentations).
Yes my styloids are elongated, however, further testing and inspection for hyoid bone issues, stylohyoid ligament tear and / or calcification, and to r/o carotid or venous issues. I believe my new doctor is going to order 3D CT scan reconstruction of head, neck, and chest next (pure speculation on my part, I’m no longer going to be seen by the other ENT). My former ENT was ordering this, but in 3 months and stated surgery in 6 to 12 monrhs. They made the Dx, but they are an extremely busy hospital affliate in my area.