First off, a kind Thank You to those who’ve offered such supportive kind words and who’ve shared a wealth of information either directly or indirectly just by sharing their story here.
I have a consult on 10/14 with vascular surgeon, Dr Omlie to discuss my CT. He does the neck incision type of surgery which I’m preferring if offered given experiences here. I also have an appt with ENT Dr Ondrey on 10/21 who as I understand does intraoral surgery for this. Not my first choice but he’ll make for a good 2nd opinion.
Trying to get radiology at my pain mgmt office to re-read my CT to actually MEASURE my styloids vs. just saying “they’re definitely longer than normal”. Measurements for me are critical and it feels like they’re being sloppy. What do they consider normal vs. what are my measurements.
I am on a steroid Demze-something (why don’t they use short, easy names for meds?) to try & ease pain & inflammation with the option of 1800mg of Gabapentin (this scares me).
Just to recap my timeline in case it helps anyone else:
*March/April 2020- began feeling pain behind jaw, very dull and annoying. One-sided sore throat that returned into throat burn. I now realize my pain is more like bad neck inflammation, I can feel my left styloid is very tender, ear fullness/pulling sensation and it’s primarily tongue burning.
*May-June 2020 -ENT/PCP/GI appts which ultimately diagnosed me with LPR reflux. Was told if meds didn’t help perhaps consider surgery. Pain was still in neck like tight muscles/full ear/throat burning after trying all kinds of meds. My vocal chords were only noted as “puffy, not angry” and my scope was pretty normal so it was pretty mild IMO.
*July 2020 had Nissen Fundoplication (reflux surgery). They performed a “loose 360” wrap so I can still carry on like any normal person would. All symptoms came back after pain meds wore off. Surgeon blamed it on intubation, nerves and ultimately anxiety. I had bad anxiety but it was pain induced anxiety. Surgery has a way of flaring up pre-existing pain I’ve learned. Not to mention while trying to find my triggers to make the pain go away eating chicken, rice and bananas for weeks then being on a restricted diet after surgery I went from 135lbs down to a frightening 117lbs in less than 2 mos. Even my family was fearful. I’ll never forget how my dad looked at me when he saw me. It was horrific. My mental health was a mess. What was happening to me? Angels on my side, outside of the pain, I’ve recovered fully am fat and mostly happy.
*August 2020 - had head neck CT with contrast and all was perfectly normal. ENT experience was horrific so I asked for a Mayo referral in Rochester
*November 2020- Mayo ENT did all the usual test and found nothing. GI suggested hypersensitivity and prescribed now my 3rd round of nerve modulators. I got about a week of relief before the pain came back. Up’d the dose and got about 2 days of relief before pain came back. So I tapered off - why take them if they aren’t helping. Same results from the Gabapentin my PCP prescribed, however I now believe the dose was too low at 300mg/day.
*Dec2020, Jan 2021- decided to just wait it out…maybe it was nerve damage that just needed to heal. Never got better.
*Feb-Current 2021 have been doing PT, craniosacral, fascial release, dry needling, deep tissue, Chiro care, TENS therapy at home, heat, cold you name it. Many PTs felt it was a muscle imbalance- strengthening only magnified the pain.
*Sept 2021- Pain mgmt appt - he believes it’s myofascial. Wants to try injections. PT I’d been seeing starts quizzing me on ES. I go back and look at the notes from Pain Mgmt doc and he notes that I’m having pain in styloid area. Prompts me to message him about more imaging to review size of styloids. He replies back that he did look at my CT prior but they looked normal however he’s in process of having radiology review my CT again.
*Sept 10, 2021: Pain Mgmt messages that radiology sees that my styloids are both longer than normal, right side is longer than left so unsure why my left is symptomatic. And here is where my ES journey begins.
I admit, when this rare thing became more of a reality, I spiraled. I’ve cried, I’ve felt scared, I’ve asked “why” and “how” so many times. And I’m certain this will continue for a bit until I become more educated, get an official diagnosis and uncover a plan. Then y’all can read about my new fears .
I have attached a photo of my CT scan from the disc I obtained. Would welcome feedback on the arrow part as to whether this looks like it could be my styloid. It’s the only image that looks like anything to me
Again, whomever was in charge of setting up this group, I’m eternally grateful. I’ve been learning so much and am beside myself over the support and encouragement found here. Even in times of hopelessness, folks here find was your lift each other up. For this my gratitude goes out to you.