Thank you so much for letting me join.
My story…
I’ve been disabled since 2020 from my career as an RN. I’ve battled so many symptoms that fit for rheumatoid, MS, EDS, Lupus and others. Specialists will feel confident it’s one of these but then labs consistently come back normal. I’ve seen so many specialists and different providers trying to find answers. Some 3 & 5 hours away. I was diagnosed last fall with mixed connective tissue disease, I’m pretty sure it was because my rheumatologist was tired of me nagging for answers and he didn’t have any. Though my symptoms don’t really line up, I’ve had a couple providers diagnose me with fibromyalgia because sometimes it’s a catch all diagnosis providers will use for people complaining of chronic pain with no clear reason.
Symptoms:
I have TMJ prosthetics due to arthritis and had a perfectly straight bite and facial symmetry since my surgery about 12 years ago (better have, after two rounds of braces and two different jaw surgeries). Over the past several years I started having some neck pain. The neck pain has progressed over the years. My swallowing started being overly exaggerated and very loud with liquids or soft/liquid foods like watermelon. I’ve had it pointed out to me on several occasions and it was quite embarrassing, but I can’t do anything to change it. I hear clicking, squeaking, snapping, crunching and grinding in my neck. MRI’s show some issues of my C-spine that typically wouldn’t cause the pain and issues I’ve struggled with. I’ve had shoulder and elbow pain, radiculopathy pain and neuropathy pain in arms and hands, but EMG studies come back normal. However, the last one she mentioned issues with my accessory nerve which didn’t make sense to her so she said it was pretty much normal EMG. I have left arm and hand paresthesia, left jaw has shifted significantly to the left, my bite is completely out of alignment now. It’s as though the left side of my face is being squeezed together from top to bottom at the same time. My left shoulder is rising up to my jaw along with a winged scapula. I have muscle contraction with spasms on the left, my ear feels like it’s full and muffled all the time but hearing tests come back normal. I get fluid stuck in my left ear frequently due to the abnormal mechanics of my ear canal and get horrific ear infections to the point the ear canal swells completely shut. I have an annoying post nasal drip and sinus issues but ENT says everything is pretty normal. I have Trigeminal neuralgia at times when yawning, eating or brushing my teeth. There’s some kind of neurological disconnect with fine motor movements and weakness in my hands (though this may be arthritic related). I fight lightheadedness all the time, tinnitus, ptosis of my left eye lid to the point I need a brow and lid lift due to vision field obstructions. I battle chronic fatigue, gastrointestinal issues, I feel like I have a large ball in my throat all the time with a scratchy throat, anxiety and periodic depression and the list goes on and on. Yet, doctors look at me as though I’m making things up or being overly dramatic because none of it has made any sense. I found myself minimizing things, feeling defeated and starting to believe I was crazy, imagining stuff and questioning if it was all just stress related to my anxiety and depression. I recently had a discectomy with ADR in my c-spine with hopes it would fix it all, but it didn’t.
Last summer I drove five hours one way to see a Maxillofacial surgeon about my TMJ prosthetics thinking they came undone or something was wrong with them and they were the source of my issues. While working on a insurance claim for services this surgeon provided I was reviewing my records and found on my CBCT and panaromic views it’s noted as incidental finding of: ossification of stylohyoid ligament noted in the superior and inferior attachments. The unfortunate thing is the Maxillofacial surgeon never even mentioned these incidental findings to me and from what I’ve read they’re the ones that typically discover this syndrome. Either way it was complete negligence on his part that caused me another year of appointments, specialists and unsuccessful treatments because he didn’t properly inform me of these findings. As I’ve started researching this condition I see pictures of faces with the exact same malformations I’ve been having. I’m currently waiting to see my neurologist and PCP to discuss these findings.
Through my research it appears I’ve done all the suggested management and treatment strategies with acupuncture, PT, NSAIDS, massage therapy and even large volumes of Botox injected with no successful relief. So I’m assuming surgery will be my next option.
My questions to this group…
Who (what type of specialist) diagnosed you or did you pursue to manage your treatment and care with this syndrome?
Those that have had surgery did you go somewhere special or stay local to where you live? As I understand it’s a pretty significant surgery and I definitely want to seek surgeons that are familiar with this procedure.
