First, I would like to thank you for this site where people with this rare disease can find some relief. Please forgive me for my bad English.
My journey began in 20 months where I start to feel a series of strange symptoms and at first without explanation.
The main symptoms are dizziness, vertigo, pressure in the temporal region, headache, fatigue, feeling of something stuck in the throat, pain and stiffness in the neck, pain and numbness in the jaw, vision troubles and occasional tinnitus on left ear.
The intensity of symptoms ranges from 5 to 10 on a scale of 1 to 10 with no explanation or reason for the oscillation. The symptoms were getting stronger and more frequent, so I started to look for answers.
I went through medical specialists from various fields such as orthopedics, neurology, rheumatology, infectiology, sleep medicine, etc… I did more than 200 blood tests more than 20 imaging tests and several others such as urine and saliva. All the results returned normal.
I kept seeking and no one gave me any answers or hope. One of the neurologists even advised me to go to the psychiatrist.
I removed all foods with gluten and lactose, cut alcohol (despite only drinking socially) and cut caffeine. No change in the symptoms after 9 months maintaining the diet.
In one of the medical consultations an otolaryngologist who was evaluating the possibility of a septum deviation surgery requested a CT scan of the paranasal sinuses.
When I received the result of the exam an observation was reported: Elongated styloid processes, associated with calcification of the stylohyoid ligaments with about 5.3 cm extension on the left and 5.2 cm on the right.
I returned to the otolaryngologist who evaluated the exams and said that the elongation is just an anatomical variation and that I should not worry about that. He recommended that I go to a dentist specializing in DTM to make a mouthguard. Following the recommendation, I put the exams aside, went to the dentist and started treatment with the mouthguard.
After 30 days of treatment with the mouthguard the symptoms continued and even worsened and those observations in the CT scan of the paranasal sinuses do not got out of my head. I had to be sure that it was indeed an anatomical variation and that it was not causing my symptoms.
I researched the ES in several international sites because the information in Brazil is non-existent and after understanding how the disease is rare, I realized that I would need to find a doctor who understood the subject or else I would not have the answer I was looking.
After researching a lot, I found an ES studies published by a Brazilian doctor. I searched for the doctor’s name and for my luck he attends in an office in the same city where I live.
I scheduled an appointment expecting to confirm that the exam results are just an anatomical variation, but when the doctor saw the exams, he asked me about the symptoms, and I told him everything. He said that many of the symptoms are probably related to the lengthening of styloid processes and indicated surgery as the only effective treatment.
He did a simple test and put the fingers in the back of my mouth, and I felt pain on both sides when he pressed.
He is a neck and head surgeon and has performed many such surgeries. I was apprehensive and relieved at the same time because I finally had a possible diagnosis.
He was honest and said that the only way to know if it is the ES that is causing the symptoms is doing the surgery.
I entered the request in my health insurance and I waiting for confirmation of the date that should be at the end of June.
I am a little apprehensive and I would like to know from the users about the post operative. How was the pain? How long to start feeling better after procedure? How much the dizziness and vertigo improved?
I read some topics from some users who reported dizziness and vertigo and who improved after surgery, so I am hopeful.
Sorry if I look cold English is not my primary language and my writing probably don’t truly reflect what I’m feeling.
Thanks a lot!