I know there have been a lot of posts here and on the Facebook group of folks who have Eagle and also experience TN like symptoms, but I’m wondering if there’s anyone here who actually had their TN symptoms resolve once they had their styloids removed I’ve read tons of folks on Facebook say that their TN diagnosis and/or symptoms remained unchanged (or in rare cases, worsened) from the surgery. Chiming in here to see if anyone could share insight or relate at all to my experience
My story:
In August/September I started to experience sharp nerve pain along the left side of my neck and at the exact point where my styloid process begins. Pursued a CT, as many of you know and my styloid process are 1.5 cm on each side, but the calcifications are 4.6 (L) and 4.1 cm (R)
Most recently, I have begun experiencing dull near constant tooth pain, burning lips, burning tongue, change in taste, and occasional sensation of a hot throat (almost like an allergic reaction, but not). This is new. I consulted with my neurologist last week who went on to say that she hopes it’s not TN , as people “jump off buildings with that” (I swear to god, word for word what she said, I even have it recorded). She also said my symptoms do not sound like TN because I do not have the sharp zaps of pain.
However… today I experienced my first sensation of a sharp jolt of pain in my tooth when eating. It scared the heck out of me and went away within a couple seconds after drinking something cold. I have no dental issues and was just seen at a dentist last week. I’m wondering could this be a b12 deficiency (unlikely, my numbers were normal 10 months ago), perimenopause, genuine trigeminal neuralgia, or eagle causing TN symptoms. What if I do the surgery and it worsens my condition? What if I put all this money, time, and energy into this eagle diagnosis when I really have something else going on, like TN. It’s just so weird that all these symptoms (the burning mouth syndrome like symptoms or GN related nerve issues- both possibly connected and or separate and now these TN like symptoms) happened within the last few months, and all suddenly. I am certain the nerve pain alongside my neck is related to the styloids.
Thank you for listening to me ramble, I’m just so scared. I have a three year old daughter and can’t imagine how much more difficult this journey is going to be. I went partially blind at 30 due to a super rare retina disease and I thought that was the worst thing that’s ever happened to me.. I don’t know how much more I can bare.
I’m sorry that you had that experience with your neuro, that wasn’t a very helpful comment! You might already know, but there are 2 types of TN- Type 1 is the electric shock-like jolts, and Type 2 is the more constant aching or burning sort of pain, and tooth pain is common even where there aren’t any issues with the teeth. So it sounds like you might well have had the Type 2 for a little while, & then a jolt of Type 1… Eagles is a known cause of TN and also GPN- that’s documented in research papers (and also stating that patients have been cured with a styloidectomy.). Burning mouth syndrome is something that’s been mentioned quite a bit too…
I can’t say for sure that the calcifications are causing the nerve pain, but given that you have calcified ligaments and other ES symptoms, the chances are it is the cause. Unfortunately surgery is the only way to tell for sure; the only alternative would be to have a FIESTA MRI, which can show if there are any other compressions on the trigeminal nerve, and is there are to have surgery for that, but then you’d be in the same position of facing a surgery which has risks & might not be the only cause of your symptoms (we’ve had members who’ve had the MVD surgery for TN but not been healed & have had to go on to have their styloids out. I can’t think of anyone off hand who have had their styloids out & then gone on to need an MVD surgery, but I might be wrong.
There’s always the chance with nerves that they could get damaged the longer the styloids/ calcified ligaments are compressing them & then it could take longer to heal or maybe not heal at all, so that’s something to consider. I had the type 2 TN, which was controlled to a point by Amitriptyline, but it had got worse before my surgery, & I was getting numbness & tingling in my face as well. It has improved since surgery, but hasn’t gone completely, although I do have other neck issues & it definitely seems to be linked to muscle tension in my neck & shoulders.
We can’t advise you what to do , but if you know you have other ES symptoms then it maybe makes sense to try that surgery first, and then look into other options if the TN doesn’t improve? If you have surgery with an experienced surgeon, then it should lessen the risks of surgery.
Just based on my research, I think there could be two things going on - the TN but also glossopharyngeal nerve irritation. From an anatomy standpoint, the trajectory of a styloid and/or stylohyoid ligament is more likely to cause issues with the glossopharyngeal nerve. However, TMJ issues (which is common in ES - whether that’s due to stress caused by vagus nerve compression between styloid and C1 or whether it’s due to poor posture caused by ES or just teeth clenching in general) is very relevant for TN because the the TMJ joint is directly in the path of the trigeminal nerve.
@SeekingInfo - I had both trigeminal nerve & glossopharyngeal nerve symptoms that completely went away after my ES surgeries. My TN began coming back on the left side a year ago (9 years after my second & left side ES surgery) & a follow-up CT scan showed my left styloid was either not cut back enough or had regrown a bit. Since I had it shortened again, my TN pain has stopped.
Ahh that gives me some much needed hope. Does my pain sound at all that what you experienced? Thank you for sharing. It’s just so nerve wracking wondering if I’m barking up the wrong tree with this.
I never had serious pain in my teeth that I recall, but I had pain in my nose, above my eye brows, in my sinuses above & below my teeth, & ear pain from my TN. I had the feeling of severe pressure on the base (very back) of the left side of my tongue that was very uncomfortable & swallowing issues from my GPN. The tongue & face symptoms went away soon after my second ES (left) surgery as those symptoms were more dominantly on the left side.
I was reading up about TN, & found quite a few people online have said high strength B group vitamins have helped with their pain, I haven’t tried it but might look at buying some!