Hi everybody, I am new/undiagnosed to ES but not new to the symptoms that we all seem to be struggling with. My story starts about 4-5 years ago when I started having pressure/pain in my right ear. That pain gradually moved to below my ear, down and behind my jawline, down the front and back of my neck and around to my shoulder blade, along with up to my temple/eye. I also started having difficulty swallowing and the feeling of something stuck or poking my throat. In addition, I started having symptoms that I thought were unrelated such as heart palpitations, digestive issues, fatigue, brain fog, etc. Over the course of this time I had countless tests done (MRI’s, x-rays, blood tests, etc.) and everything has come back normal. I have seen a dozen or more specialists and tried probably twice as many treatments with no success. I even spent two months in Florida seeking Prolotherapy injections for cervical instability. Nothing has ever made a difference. I recently have been actively pursuing chiropractic, acupuncture, physical therapy and massage therapy which all seem to be making my symptoms worse. Over the past couple of days I started researching deeper into my symptoms and came across ES, which seems to match up exactly with my symptoms. It is hard to imagine that none of the specialists have mentioned it as a possibility. For the first time in a while, I am hopeful that I might actually have an answer as to what might be causing my symptoms. I am grateful that I found this resource, and have been amazed by the support and commitment from the members. As I am just now starting my journey with ES (possibly), I do have a couple of questions that I am hoping are easy to answer:
I reached out to Dr. Samji’s assistant who sent me the following requirement before being able to book a consultation: “Measurement of the Styloid on CT scan (head and neck w/out contrast).” My question is, when I go to my ENT or directly to imaging, what exactly should I request in regards to the CT scan? Since this condition doesn’t seem to be well known, I am expecting to have to push and be very explicit with what I need for a diagnosis.
I have also been having low back pain on the right side that wraps around to the front of my abdomen. Has anyone else had these symptoms related to ES? I have always thought they were unrelated, but they are only on the right side just like all of my other symptoms and they started around the same time too. I am not sure if it is a coincidence or not. Again, treatments have only made this worse as well.
Thanks for the help and I look forward to being an active member of the community throughout this process!