Hello fellow ES sufferers!
I just found this site recently and am elated! The syndrome we have is very rare, so it's good to know that we can rely on each other :)
Three years ago I felt a dull pain on the left side of my jaw. I thought I had come down with a virus, so I felt around to see if my lymph node was swollen. Nope, nothing externally. After a couple of days of experiencing this dull pain, I decided to explore the source inside my mouth. I found a "lump" and experienced a very sharp pain as soon as I pressed on it. OMG, I have throat cancer, I thought immediately.
Fortunately, my cousin has been working for a prominent ENT for over 20 years. I made an appointment, was examined, had an MRI (contrast and without contrast), and was diagnosed all in the same day....it's the benefit of having a large family. I know, I was very fortunate with getting such a quick diagnosis. The ENT said in his 30 years in practice, he's never seen a patient with ES, he just remembered reading about it in med school (excellent memory, heh?). He suggested, though, because it's so rare that I obtain a second opinion. He referred me to another ENT and the symptom was confirmed the very next day.
Although my diagnosis was done very quickly, it's not to say that living with ES has been very easy. I had been experiencing varioius symptoms on the left side of my face for years without paying much attention to them..heaviness of my face, pain in my left ear, numbness of my face (that caused me to go to the ER), discomfort when yawning, vertigo, dull pain on the left side of my jaw and most recently, a sting when swallow. I swear I've lost my hearing in my left ear but tests state otherwise. The symptoms have gotten progressively worse and considering I haven't reached 40 yet, I'll probably need to have surgery.
I've found that some things make it worse like chewing gum and drinking cold beverages. Some things make it better like drinking warm beverages and I know you're going to think I'm crazy...but eating spicy food. I know, it's crazy.
I can't share these things with my doctor because he hasn't had another patient with this syndrome. I can't tell my family because they think I'm making this stuff up. So, my dear ES sufferers, I'm thankful we have a syndrome that is curable and I will turn to you from now on. Likewise, please feel free to ask me any questions - I've experienced a lot!