@SRR - I just read your bio and shame on me, I didn’t know you’re new here and never properly welcomed you! So welcome and know you’ve got a huge resource for information and experiences. While no one is a medical expert nor can they make choices for you, they will provide you with tons of support that will help you make a good choice for yourself! I personally couldn’t have asked for a better group to help me navigate this!
That said, I’ve scoured this forum and read often that symptoms can and do come and go but they’ll never go away permanently on their own if they’re attributed to ES. Surgery is the only cure. This is a very small area and a lot of things are going on here. 6 of your 12 cranial nerves run through this area as well as vascular structures, muscles, ligaments and bones. There’s very little room so where calcification occurs, to me it feels like it’s a 50/50 shot of whether one has symptoms or not. If you’re symptomatic, chances are good it will only get worse as that calcification continues.
I’m glad you asked about my burning. I wish like mad I would’ve had something that would’ve been visible to guide me into a direction of what was wrong. I had not a single visible sign. No redness, no sore tonsils (which I still have as often folks who had tonsil removal are diagnosed with ES) and no visible inflammation of any kind. Which further hindered trying to figure out the source. I really thought I was crazy!
I began having symptoms March of ‘20 right after CV19 exploded with no rhyme or reason. I’d spent every day of every month m I had, obsessively trying to figure it all out.
Fall of ‘21 I was trying dry needling. After several appts my PT started to quiz me about ES because of where my pain was but fully disclosing he knew very little about it. I had begun seeing a pain mgmt doc at this time, went online to review his notes which referenced “pain in the styloid process area”. I immediately messaged him and he said he was sending my 2020 CT scan back to radiology for review. 2 days later it came back stating “definitely longer than normal”. Sadly, this is such an unknown diagnosis that I’d hit a wall on who could help me. Clearly, no one to that point knew enough about it to help. Still today when I share my diagnosis I get looked at quizzically.
October-ish ‘21 I joined this forum, began asking questions and getting a ton of support. I met with the two specialists on the list here in my area and both felt ES was a likely diagnosis. The ENT ordered a 2nd Maxillofacial CT to specifically look at my styloids. He guessed them at 3.5 (L) and 3.1 (R -thus far asymptomatic). He also agreed that the vascular surgeon I’d already met with would be a wise choice to do my surgery. I appreciated his transparency.
Due to CV19 and is wake, it took me 7 mos to schedule my surgery then it was a mere 2 week countdown. But MN was a huge hot spot for CV19 at that time. My styloid process was removed to the skull base and the ligament was removed. There’s pretty much a null chance of this ever coming back. My styloid upon removal was 4cm so a bit longer than the CT guesstimate, which is typical. I still have some symptoms- mostly a level of burning still but as I’ve been very gently reminded of here during my panics about recovery, nerve irritation could’ve been occurring long before symptoms became visible (thank you KoolDude) and it takes a very long time to heal. I’ll get there, I’m confident!
And I’m confident you’ll make all the right decisions along your path to assure yourself in what the nexts steps are! Lots of folks here that are ready and willing to answer questions and help you along!