ANA Discussion Forum
General Category => NF2 => Topic started by: VictorDedalus on January 29, 2018, 10:50:36 am
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.
when MRIs are done, they take image 'slices'. Those slices can be as much as 5mm apart. So if you had a very small AN, less than 5mm, it is possible that it could have been missed on an MRI. Given that it's unlikely that you were lined up to the mm in the same spot for the second MRI, any AN would have to have been very small to have been missed on both MRIs. However, if no one was particularly looking for it, it's possible that it was there and not noticed. I had a 4mm meningioma missed because it was so close to major blood vessels. Once it grew some more and was noticed, they went back to the older MRIs and confirmed that it had been there all along.
The more detailed MRI looking for an AN will probably take 2mm slices through that area of your head. You may have had that imaging done by now, as I see your post was over a month ago.
You are right that mosaic cases of NF2 can often show up later in life. I was 50 when my AN and first meningioma were found.