ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: chefcrsh on June 27, 2020, 09:47:02 am
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Howdy,
A few years ago I started experiencing hearing loss in my right ear. As it progressed last year I had the first MRI that started me down the ANA rabbit hole.
Because of my rural location I had a few months consultations with Dr. Google before meeting Dr. Weisskopf of Phoenix Mayo (a very fine Doctor). We also met with the rad-onc team of Dr. Vora (also very capable and kind).
Both were happy to treat the tumor (one with surgery the other wit beans) but also happy to indulge my desire to wait another scan in December.
The December scan showed and anomaly (The tumor didn’t scan as a typical schwanoma)that brought the whole shebang to a halt. We were to scan again with further parameters to try and determine the nature of the now undetermined lesion.
Covid and lock downs intervened for a a while, But two days ago I had a follow up scan with additional fat suppression parameters and am now diagnosed with an exceedingly rare lipochoristoma, a tumor that is believed to grow from the hearing nerve cells not the sheath. Bad news is that with this type of tumor there is much less chance of hearing and balance preservation, so very little benefit to treatment unless hearing and balance have been significantly effected or the tumors is large enough to cause other Cerbellopontine Angle concerns.
So watchful waiting in my face is the only recommendation, and if I had rushed to treatment last year I would probably have had hearing loss and perhaps balance loss. Sometimes it’s best to move as slow as the tumor to consider all options.