Good morning, all. I'm a 37-year-old male who underwent total resectioning of a tentorial meningioma on 12/20/16. Followup MRI in 04/17 showed no recurrence or complications, and I began to resume my life as best I could. My initial symptoms prompting me to seek medical attention were dizziness, pulsatile tinnitus and headache. All subsided after surgery except for dizziness, which I still endure. It's not horrible, but it's a nuisance.
In June of 2017, six months after surgery, I spontaneously developed severe unilateral tinnitus in my left ear, the same side of my head as the meningioma. I contacted my neurosurgeon's office, but was categorically dismissed and told to go to an ENT. My ENT conducted a hearing exam and reported no discernible hearing loss. He said I'd just have to live with it. I then saw another neurologist who ordered an MRI in 10/17. That scan also showed no recurrence or complications. She too said just learn to live with it. No one mentioned NF. Not willing to chalk up the tinnitus to a coincidence, I sought the counsel of an interventional neuroradiologist, who so far has proven exceptionally attentive and proactive. After hearing my case history, her first question was whether anyone in my family had a history of Neurofibromatosis. I had read about the condition, so knew how portentous this line of inquiry was. Despite having known about NF, I hadn't made the connection between tinnitus, a possible vestibular schwannoma and a previous meningioma. My neurologist is now pursuing a more detailed, focused imaging study of my left ear, as well as a dynamic CT to rule out vascular complications such as a fistula.
My question for the group is whether it is likely that two MRIs could have failed to detect a schwannoma, if that indeed is the cause of the tinnitus. My neurologist seemed to think it entirely possible, but I wonder how likely. Both studies were conducted with and without contrast. Can a tumor be so small that it goes undetected, but still cause tinnitus?
In short, I'm worried. My cousin, who is under 30 years of age, has an optic sheath meningioma. The coincidences are building. Most of the literature suggests that NF2 reveals itself through early onset, but perhaps I'm a mosaic? I have no dermatological abnormalities.
Anyway, any thoughts are much appreciated. Best to all.
