TL;DR
Processing my new ES diagnosis and the potential of styloidectomy alongside concurrent orthodontic treatment and prospective jaw surgery. Trying to make decisions for my future without going broke. All while my head hurts, my brain is foggy, and I just feel yucky all the time.
My biggest questions to everyone:
- For you, were overbite, overjet, bruxism, TMJ, etc at all related to your ES?
- Anyone had to try and deal with the need for orthognathic surgery and styloidectomy at the same time? Tips?
- I have heard mixed thoughts on whether headaches can be the primarily ES symptom. Any wisdom?
- When we all talk about neck pain, what kind are we talking about? Toothpick stabbing tissue type? Or seemingly unrelated soreness? Because my neck is always either stiff, sore, weak, or something. It just is not happy but its hard to say if it is ES or maybe something like CCI.
My Eagle Syndrome Basic Info
34F, recently diagnosed with Eagle Syndrome. 4.4cm on the left, 3.4cm on the right. Diagnosed with CT neck reconstruction during a telehealth visit with Dr. Osborne. In pulling up the imaging myself, the left SH (is that how we abbreviate it here?) and head of C1 have a vein pretty snuggly perched between them.
I’m currently working on getting in with someone closer to home to get more information on what comes next. I’m hoping to get more solid info on the vein situation.
Other Symptoms, Diagnoses, Treatments, etc. - For Context
- Headaches since I was 8 or 9. Sometimes they’re migraine-y, sometimes they’re not. Often times do have a positional element. Not sure how much is just posture and how much is potential ES stuff.
- Migraines - started as episodic but have become chronic. Vestibular, cervicogenic, menstrual, etc with frequent status migrainosus. Currently on 300mg Vyepti, Nurtec as needed, and Botox. They’re helpful but…well, I wouldn’t be here if they fixed everything.
- Neck pain - as described above. Sore, stiff, aching, etc. I have been through PT. I get monthly upper cervical chiropractic and massage. I use a cervical pillow. These all just help control, not actually fix.
- Orthodontic stuff - Recently learned that my 1cm overjet with deep bite is actually considered a major skeletal discrepency meriting surgery. Yay. And here I thought it was just cosmetic. So I started braces this week and am considering getting mandibular advancement orthognathic surgery in a year when I hit that part of treatment.
- TMJ - Probably in large part due to the above, I’ve also been diagnosed with TMD and advised to seek treatment.
- Vascular and autonomic stuff - POTS and vasovagal sycope run in my family, but even treating those doesn’t help with whatever this is. If I do anything at all in the heat, my head feels like its gonna explode. If I try and do any sort of cardio, my head feels oxygen deprived. My head limits my body far before I can get any meaningful exercise done. I feel like I’m 70.
- Brain Fog and Fatigue - its major. Even with an ADHD stimulant on board I struggle to do anything unless I have them put me on a dose high enough to make me jittery. Not good.
- Mental health - no surprises here but, in addition to ADHD, I’ve got anxiety and depression. The depression in particular feels particularly fueled by symptoms.
- Hypermobility - As I’m sure someone will ask, yes. I’m stretchy. I have not had an official diagnosis. I did a genetic test and didn’t get any hits on there, but there are way too many hypermobility things present for me for it to not factor somehow.
- Tonsillectomy, ear surgery history
- GI - This one is lower on the list but present. My tummy is just frequently not happy.
) & the transverse process (TP) of C1. IJV compressions decrease the rate that deoxygenated blood can flow out of your brain while freshly oxygenated blood flows into your brain via the ICA (internal carotid artery) at the normal rate. The higher inflow of blood than outflow causes intracranial hypertension which in turn causes many of the symptoms you’ve mentioned: headaches/migraines, neck pain - especially occipital/back of the head at skull base, POTS and vasovagal sycope (your family members who have these may also have IJV compression even w/o an ES diagnosis), heat sensitivity, & oxygen deprivation during activity; & brain fog/fatigue. Visual changes & tinnitus/pulsatile tinnitus. We have links to many research papers in our Research Paper section regarding IJV compression & its related symptoms.