New to the site, but thankful this community is here.
Recently diagnosed with bilateral ES; 4.8cm on the right and 4.2cm on the left. To date, I have only been symptomatic on the right though, with ever intensifying vascular symptoms over the past 12 months. What started as mild (but persistent) pain/irritation behind my ear and jaw line has now manifested itself into the symptoms/issues so many of you have described, i.e. the brain fog, dizziness, weakness, lethargy, headaches, eye focusing issues, etc. along with panic attacks, heart racing, etc. at different points.
In similar fashion, getting to a diagnosis was an exhausting process: I have seen 3 ENT’s, 1 vascular surgeon, 2 neuro specialists, 1 jaw specialist, 1 endocrinologist, 2 naturopaths, 2 GP’s and 2 ER’s who ordered a total of 3 MRI’s, 3 CT’s, 2 ultrasounds, and a thyroid biopsy; all to misdiagnose me with carotidynia, migraines, tension headaches, tmj, meniere’s, a patulous eustachian, hahismoto’s syndrome, a dissected carotid, depression, and chronic fatigue syndrome amongst other maladies.
Currently scheduled for intraoral surgery next week. The symptoms are such that it can’t be put off any longer. The intraoral option is at the election of my doctor who feels it makes the most sense in light of the styloid’s angle and how it is pressing into my throat.
Would certainly appreciate any thoughts/insight around the relief I might expect from my vascular symptoms, but also happy to answer any questions around symptoms or process for others still struggling. My diagnosis wouldn’t have been made had I not advocated for myself and pushed for one final CT with the right doctor(s). It shouldn’t have to be so hard.