I am currently undergoing evaluation for possible ES.
It has been a long process compounded by conflicting opinions.
For well over a year, I experienced jaw pain on the left side. The Veterans Administration dental clinic said the pain was related to my teeth. In November, they extracted 3 teeth on the left side.
When I returned to the dental clinic in January, I informed the dentist that I was still experiencing severe pain. He started palpating my jaw and neck and noted a mass (approximately 1 cm) behind the left mandible.
They ordered an MRI of the brain but that imaging study did not capture the neck.
I went to a civilian ENT who was concerned I had osteonecrosis. He referred me to an civilian oral surgeon.
The civilian oral surgeon ordered a CT without contrast of the face and neck. The radiologist did not find any masses.
The civilian oral surgeon said he was stumped and wants to monitor the mass for several months.
I then made an appointment for evaluation by a military ENT doctor. In 2003, I had extensive jaw surgery to include a Le Fort I advancement and HDR implants in the mandible. They thought perhaps the pain was being caused by a hardware failure. So they refer me to the military oral surgery clinic.
The military oral surgery clinic reviewed the CT images and made a diagnosis of ES. They referred me back to the military ENT.
A different doctor examines me this time and another doctor reviews the CT images and states the styloid is “impressive.” They tell me that ES is a diagnosis of exclusion and that they want pain management to do a nerve block to rule out myofascial pain syndrome.
My pain management appointment was today and he said the styloid measures approximately 40 mm. He is sending the images to a neuroradiologist for review. He wants to do some type of injection/nerve block while guided by X-rays and ultrasound.
Current medical history:
• Wegener’s granulomatosis
• Rheumatoid arthritis
• Chiari I malformation
• Sjogrëns syndrome
• Progress polyneuropathy
• Inflammatory myopathy
• Gabapentin 2700 mg at bedtime
• Extreme pain behind left mandible
• Extreme left ear pain (It feels as if an ice pick is being jammed into my ear.)
• Sensation of something stuck in my throat. (Previous work-up for this issue included an endoscopy and dilation of the esophagus. No reflux was noted and the sensation still remains.)
• Excessive salivation.
• Extreme burning sensation along jaw line.
• Occassional gurling sensation near the jugular vein.
Did any of your doctors require an injection/nerve block before making an official diagnosis of ES? If so, what type of injection/nerve block?
Are there radiologists who can review CTs? I am concerned that the radiologist did not note anything about the styloid while the oral surgeon and pain management doctors did.
If it is determined that surgery is indicated, I am hesitant to use the military ENT surgeon. He’s only performed one ES surgery several years ago. Are there experienced surgeons who can make the diagnosis and perform the surgery within a short time free? (This applies only if I have to travel to a different city.)
Thank you in advance for your assistance.