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Acoustic Neuroma or NF2?
by arushi1, Jul 16, 2008 06:08AM
It is my understanding disorders of chromosome 22 are Taybies Down Syndrome, breast cancer, cleft palate, vestibular schwannomas, NF2. On my family side, my nephew has Taybies Down Syndrome, my mother and her sister were diagnosed with breast cancer. I have been diagnosed with vestibular schwannoma and the only one in my family that has vestibular schwannoma, also I had a tiny hole in bony palate of mouth repaired while a teen (doctor didn’t know what the cause was), also at that time had a pilodnial cyst surgically removed along with part of my coccyx. I understand ependymomas can be misdiagnosed as pilodnial cysts and ependymomas are one of many, symptoms of NF2. Oscillopsia (bouncing vision), numbness/tingling to arms, wrist and hands, are some more symptoms that I have and have been diagnosed with. After my surgery in 2005 to remove vestibular schwannoma from left side I had complaints of oscillopsia and nystagmus, also am deaf in left ear. In 2008 a recent MRI showed inflammation to inner ear (same side as vestibular schwannoma). I had labyrinthectomy to resolve issues. I still have, albeit, mild oscillopsia along with constant tinnitus present in both ears with hearing loss to serviceable ear and a fullness in that ear. My concern is, given the ongoing symptoms I am having, maybe the misdiagnosis of pilodnial cyst so many years ago, is it a stretch to think I could be NF2 mosaic where there is only one vestibular schwannoma and years later second one?
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It is really hard to prove if this is indeed an NF2. Neurofibromas should be diagnosed histologically, through a biopsy of visible lesion. Without such, it is indeed very hard to ascertain its presence. Other symptoms that may lead to suspect this condition is the presence of multiple skin tags which are the classic signs of neurofibroma.
What may be happening now is a risk or consequence of the operation (since any operated part of the body may really sustain injuries, and will not really be the same as before). Meniere's disease should also be considered at this point as well as conditions such as vestibular neuritis.
Regards.