I saw ENT surgeon, Dr. Neil Futran (on list here for Washington State) the day before Thanksgiving.
Background : I have had severe pain in the styloid area since May of 2016. It started as a really bad earache with swelling underneath my ear. I later found that my left sternocleidomastoid muscle is in complete spasm, getting worse, so bad my head tilted to the left.
I cannot count how many doctors I have seen. I was told over and over it was “in my head”, because I have a “history” of major depression, anxiety, and PTSD, even though I have been doing very well.
(Since 2016, I tried every nerve medication, had a trigeminal nerve block, a Medial nerve block/ablation (back of my neck, hoping to burn any nerves causing pain), every muscle relaxer. I have had Botox in cranial nerves (that helped with a symptom, my left eye stings and tears, it hurts), steroids injected everywhere, prescribed steroids, much more)
I finally found a Jaw/ Orofacial pain specialist Dr. Jason Pehling (in Seattle). He has spent 3 years trying to help me. Very long story. He did not consider Eagle Syndrome because my neurologist had previously “ruled it out” based on my symptoms (If you are in Washington, and have Orofacial pain/jaw pain/headaches etc, he is the best specialist to see . People fly from all over to see him…(he is NOT an ENT). He is like “House, MD”, lol.)
I had a 360 imaging CT scan done in early October at Dr. Pehling’s (my third scan there) He saw the elongated styloid processes (amongst other jaw issues, sigh). He sent the scan to a specialist- a very experienced MD/PhD who specializes in radiology, confirmed the styloid processes were 4 cm bilaterally. (Additional results from a traumatic fall I had in January 2019).
It is important to mention that I had an at home sleep study done in October 2018 . The results showed mild sleep apnea . I have no symptoms of sleep apnea (that I know of). Most Doctors finally agreed that I was clenching my jaw, causing the left sternocleidomastoid muscle to spasm, and the cause of the clenching was sleep apnea.
Dr. Pehling was not convinced this was the cause. Clenching my jaw was a new problem. I had no idea I was clenching. He was suspicious that sleep apnea was the cause because I was clenching 24/7, while awake. He made an appliance to wear 24 hours a day, which helped, but we knew there was more.
I fell in January, and that changed everything.
I fell out of my loft and landed on my head (left temple/upper cheekbone, left TMJ. Severe concussion, memory loss, my lower jaw was dislocated, it is now permanently moved forward and to the left. My vision has changed, I am still recovering from a lot of things.
Appointment with Dr. Futran at University of Washington
He had a cancellation and I had two days to rush my medical records and my 360 CT scans to him. The files are huge, they are on a DVD, so I can’t post any pictures. I have 4 cm bilateral styloid processes.
He was absolutely amazing, best bedside manner! He is the big cheese ENT surgeon at the University of Washington. I was just going in for a consultation, I was nervous.
My prior experience with surgeons throughout my life - generally they are very busy, conversations are short, abrupt, etc. Dr. Futran spent over 3 hours with me , he was very easy to talk to, he reassured me that this is REAL.
He was completely prepared for my appointment! I have thousands of pages from the past 3 years, somehow he had gone through it and knew everything. He had reviewed my scan beforehand. I was astounded, out of the million doctors I have seen none have been so prepared.
I don’t have classic symptoms of Eagle Syndrome, except a sore throat. I was worried sick before my appointment that I would be dismissed. My general ENT did an exam - I have my tonsils, they are huge, and I have zero pain with palpitation.
Anyhow, he did a thorough examination. He showed me my CT scan, going through each 360 picture to show me where my styloid processes are growing.
My styloid processes are growing behind the tonsils, it is difficult to tell where or what they are pushing on. There is a possibility that I have a variation of ** glossopharyngeal neuralgia**.
He said I have tried everything (before I fell, I meditated, used the Curable app, journaled, educated myself on chronic pain, still seeing a pain psychologist, biofeedback, acupuncture, physical therapy, massage, etc), and agreed that I needed surgery to completely excise the styloid processes!
Because of the size of my tonsils (grade 3+), and the location of the styloid processes, he recommended the intra oral surgery to remove my tonsils, which have to be removed anyhow. If I have sleep apnea, removal of my tonsils will really help. It will also help open my airway, which is very small. I might not be getting enough oxygen.
Surgery is January 3rd. . He was very up front about what he thought the success rate will be: 50-60% .