It’s been about a year since I last posted and I thought I’d give an update. Feedback, suggestions, ideas would be most welcome. I’ll apologize in advance for the long post but a lot has been going on!
To briefly summarize, I first noticed tingling on the left side of my head and face along with pulsatile tinnitus almost 10 years ago now. In her later years, my mother often commented about this “sensation” she had on the left side of her head. Her doctors said it was anxiety. My tingling was very mild, intermittent and resolved with ibuprofen. In 2016 I noticed a hard “something” in my throat under my jaw. My ENT brought up ES and ordered a CT scan which confirmed my styloids were between 4-5 cm long. Between 2016 and 2021 I continued to have mild flare ups of tingling and pulsatile tinnitus. Over that time my left styloid seems to have “moved” or “grown” in that it pokes into my throat near the base of my tongue.
In June of 2022 I experienced an “explosion” of tingling on the left side when my massage therapist used a hot towel to twist and pull on my neck. Ever since, I have had much more frequent tingling, twitching around my eye, mild soreness around my temple and base of ear, mild to moderate headaches, muscle spasms and popping of muscles in my neck. Symptoms have been daily in recent weeks.
My medical journey since June of last year has consisted of the following tests/scans/visits:
- MRI of brain: no acute stroke but evidence of chronic lacunar infarcts
- CT of temporal bones: abnormal thinning of both, arachnoid granulations and thinning of the bone over the left superior semicircular canal with probable dehiscence.
- CTA of Head and Neck: Elongation of the styloid processes/ossification of stylohyoid ligaments without mass effect upon the adjacent vasculature. Advanced multi-level degenerative changes of the cervical spine. No acute abnormalities of intracranial area or vasculature. Nonspecific evidence of IIH (partially empty sella and extensive remodeling of the left middle cranial fossa.
- Ophthalmologist: Diagnosed with plateau-iris closed angle glaucoma in both eyes with high pressure in right eye. No optic nerve damage.
- Neuro-ophthalmologist: Great doctor…confirmed no issue with optic nerve…focused on Trigeminal nerve and IIH.
- MRI of trigeminal nerve: No abnormalities found.
- Ultrasound of eyes: Confirmed glaucoma diagnosis and lack of optic nerve damage.
- A battery of hearing/balance tests: Likely dehiscence of left superior semi-circular canal. Waiting to see specialist.
- Two visits to a neurologist: No real help. Did dementia test, ordered sleep-study, treating high Cholesterol, ordered lumbar puncture.
- Lumbar Puncture: Low normal pressure and lab tests of fluid normal so no IIH or disease.
- Heart Stress test and Echo: No blood flow issues.
To close this out I’ll mention a few additional symptoms. Fatigue, anxiety, depression, I am a singer and long rehearsals seem to exacerbate the tingling/soreness, one episode of dizziness after singing, random, short-lived “pin-prick” pains in various parts of my body, random, mild muscle twitching in various parts of my body, dizziness the last three days (very unusual for me). I likely have Hashimoto’s due to extremely high thyroid anti globulin results suggesting autoimmune problem.
My ENT dismissed ES as I don’t have the traditional ear and throat pain or difficulty swallowing. My other doctors haven’t dismissed it but can’t find any vascular or nerve abnormalities. My naturopath has helped with digestive and anxiety issues.
I THINK I have a variation of ES which may cause intermittent vascular or nerve compression due to changes in head position or jaw movement which could over the many years have caused intermittent intracranial pressure increases and erosion of bones over time. My cervical spine issues could also be causing spinal canal stenosis which could cause IIH. If it’s not ES then it’s got to be related to the issues with my ear or the terrible condition of my cervical spine. The fact that CT/MRI scans are done in a stationary, neutral position could mean they are just missing the compression.
With all that said…What do you think??? I plan to do the sleep study and will see the balance doctor in July about the dehiscence. I also plan to see the ENT again to have further discussion. I need to gather up all my scans and hopefully get them into 3D so I can see things for myself.
Thanks!!!