Expert: Dina Q Goldin, Ph.D. - 3/4/2009

Question
Back again!  I have the unitlateral hearing loss with pulsatile tinnitus which I have been told is not an AN but possibly an intracochlear schwannoma and as such no treatment unless it continues to grow and I lose all hearing.  Well 6 months later I have continued unilateral hearing loss with now no speech discrimmination left.  Can hear some noise.  The enhancement was indicated to be about 4 or 5 mm.  Also, acquired second tinnitus which is like being in a wind tunnel.  Sometimes worse than others. Haven't been able to find anyone who can help as told this is so rare.  Two renound doctors said the MRI's were not conclusive and that a normal fat deposit or hearing from the carotid were responsible.  I do have a stenosis of the carotid but not the side of the ear problem.  Two other renound experts indicate the MRI is indicative of IS.  Whom should I contact regarding this probable intracochlear schwannoma and my ongoing symptoms.  I see a lot of info on AN's and I do have most of the same symptoms but my MRI's have not confirmed that location.  Thank you!!! PS. I have purchased a hearing aid for the opposite ear as I have some mild hearing loss in that ear as well, and it helps to amplify and to pick up sounds on the bad side, without it, I could not pick up conversation, and someone coming from that side to my  back has caused me to startle. A hearing device in the affected ear is now useless.  Thanks again!

Answer
Acoustic Neuromas can grow anywhere along the vestibular nerve, from the cochlea to the brain. Intrachochlear schwannomas are basically ANs that happen to be growing much closer to the cochlea than usual.  While they are unusual, a specialist who has seen many ANs should be able to work with them.  I recommend a consultation with the AN radiosurgery team at the John Hopkins, who have a lot of experience with ANs.

For your tinnitus, there are many tricks that can help, such as noise maskers that create white noise and soften the tinnitus for many patients.  I suggest contacting the American Tinnitus Association (http://www.ata.org/) to help you find the tricks that work for you.