I am new to this forum and brand new to the world of acoustic neuromas. I just had some tests yesterday which confirmed the "significant" (50%) hearing loss in my right ear which I noticed late last fall. I've had tinnitus in that ear solidly for a year and less consistently for 3 years. A little backstory on that, if you're interested: The ringing started in my right ear with high pitched loud sounds that overwhelmed me momentarily then went away. That happened fairly often for several months. I remember over the course of the next year being sensitive to pressure changes and the tinnitus was periodic everyday, but soon became an ever present thing. I didn't think much about it until I noticed a strange feeling of pain/pressure in the area around the back of my ear, and then hearing loss in that ear too. I went to the doctor in December to inquire about the hearing loss and strange pain, but he didn't find anything physically wrong with my ear, I had no viruses, and no trauma, so he said it was probably TMJ and I should practise relaxation techniques. Except for the ear issue, I didn't have any other symptom of TMJ. I attributed it all to advancing years (I'm 51) and endeavored to get more exercise.
Recently, one of the teachers at my daughter's school announced she is having surgery this summer to remove several tumors in her brain that have caused her to lose her hearing in one ear. I was really stunned to learn that a tumor could cause hearing loss. I looked it up and found, of course, acoustic neuroma. I was equally stunned to see that unilateral hearing loss and tinnitus, such as what I've experienced, is usually the first presenting symptom of an AN. So I made an appointment with the ENT. He was vague about potential causes of my sudden hearing loss (50%, most in the high tone range). He said the auditory nerve was at fault and that the loss was permanent. Even though Ans are super, super rare, he said, he nonetheless ordered the mri of the brain/iac to rule it out, and I'll have that in 2 days time. Would he have ordered such an expensive test if it weren't really necessary?
Since I first learned of AN, I have been reading people's stories, which I think are very important. I know for me personally it really helps to identify with your experiences, and I get the feeling that others feel the same way about it that I do.
--what was your experience when you first had a hearing test? Did your doctor immediately suspect an AN or was the doctor vague about potential causes? Did you leave your appointment understanding your symptoms?
--did you first hear about ANs after you had been given an MRI, or did the doctor discuss the possibility with you at the time you were first evaluated?
--I see lots of stories post diagnosis. Do you have any stories you want to share about the actual diagnostic process?
Well, if you're still reading, I'm grateful and thankful. I can't say I'm looking forward to potentially being a part of this club, which my doctor assures me is exceedingly rare. He actually said, "So when I call you to tell you that your MRI is normal, which is extremely likely, we can discuss hearing aid options." I do plan on chatting soon with the teacher I mentioned above, to make sure she finds out about this terrific forum.