May I ask a few questions of the experts here? Please bear with me as I navigate a long post:
For a year and a half Ive have left-sided pain like muscles pulling in and around C1/C2 and like it’s pulling on my inner ear and tongue burning non-stop all day every day…no other symptoms- no burning in my neck or face, no headache, no stabbing pain, not feeling throat pain.
Ive been through the wringer like everyone here. Imaging, meds, surgery because they thought my symptoms were from reflux, poor diagnoses, even asking ME what I’m finding online, many PTs & Chiros, exercises, meds (cymbalta, Gabapentin, amitryptaline, nortryptaline, muscle relaxers, anxiety meds - but a couple stiff drinks seem to help!) …the rabbit holes are endless. Ive had multiple chiros tell me there’s subluxation occurring in my cervical spine but no one can solidly agree on exactly where (C1-C4). One of my PTs says C1 is the culprit (which I can feel it protrudes more on the painful left side) another PT is less than happy about the C3/C4 mobility, a third PT agrees to C3/C4 mobility issues. I’ve also had many muscular issues in my neck (tight muscles/compensation/tone). No other issues, mild C6/C7 degeneration (normal for my age), no other falls, injuries, rotation is pretty good, etc
Here’s the fun part: I’ve recently just gotten an email response from my pain mgmt doctor that both Styloids are “definitely longer than normal” but the right is longer than the left (my left side is problematic) and in great doctor fashion, he shared little details like size. He did say it was hard to see what was causing the pain from the image (CT with contrast) and seems unwilling to further investigte. Only that he’s going to reach out to colleagues for injection options if I choose. You can imagine, I’m livid at the lack of detail and it sure doesn’t feel like an official diagnosis given Ive only had one consult with him. As of today, I have a consult with Dr Ondrey on 10/21 and my images are being sent to Dr Omlie for review. I’m also hoping to get more details on the lengths of styloid (on the phone now to request this info)
I know ES symptoms can be broad, often times asymptotic and I’m not looking for an official diagnosis here, but I am curious about any input on my scenario you might have. I don’t know what else to even ask the doctors at this point.
- can ES cause muscle tension feelings (like a bad knot) and mess with cervical alignment?
-is there anyone who’s dealt with tongue burning and have had surgery, does it go away?
-are there any diagnostics besides CT?
-can a CT scan show what nerves could be involved (especially as it relates to tongue burning - I’ve been told this is from the trigeminal nerve).
I welcome any feedback. I know how “lucky” I may be compared to others but no lie, I’m TERRIFIED of this!! My anxiety is off the charts, I’m not eating, not sleeping and just a hot mess.