Nearly a week has passed and I haven't heard from the ENT, I'm a bit angry thinking I have just spent over $700 on this test and i don't even get a courtesy call with a negative result. I call the ENT and leave an answer on his machine. Within about 10 minutes the ENT calls me he has just reviewed my MRI, I later get a 2nd call when they retrieve my voicemail. Seems he was calling me prior to having received my call, I'm not so mad anymore.
" I've reviewed your ENT and there is a growth on your auditory nerve called a Vestibular Schwannoma. This is beyond our expertise so we are referring you to Dr. H". Stunned, I don't even know what to ask. "We will send your records to him, you should call him for an appointment. We consider you to be out of our care at this time since this is something that a specialist should treat, but feel free to call us if you need assistance......" or something like that, I'm not following very well. I also hear the words benign tumor and unilateral hearing loss. My head is spinning. I ask just one question...Can you spell that for me? I'm then given the spelling as well as another name, the more common.....Acoustic Neuroma.
I'm at work during this phone call. I have no idea what I have just heard nor do I know how to react. I hang up, sit at my desk and wonder if I should cry. I take my phone to the bathroom and start Googling Acoustic Neuroma. I call my husband, John, and tell him over the phone just as i found out. This probably was a bad idea but I'm not thinking straight. I recall a conversation with my new friend on the evening of my MRI, when I found out she worked for an ENT. I text her..."MRI says I have a growth on my auditory nerve, what do you know about Dr. H?" She replies back "I'll call you tonight". Back in my office I have about 3 more hours to finish out the day, I consider going home but what would I say.
At home that evening I call my friend. She tells me I have options and gives me the name of 2 other doctors. She warns me that Dr. H is likely to recommend surgery and that although he is a good surgeon, he has a reputation of being quick to operate. I call several family members and share the news. I cry a little, I cry a lot, then I turn to what I know best.....the internet.
Hi Becca, I have recently been diagnosed with Sudden Hearing Loss. I thought it was some sort of ear infection in the beginning and didn't think much of it, but when after about four days I barely could hear anything on my left ear so I decided to go on the internet see if anyone else had this...and i found that it was likely a case of SHL so I decided to go see a otolaryngologist. I was given prednisone for two weeks and my hearing 1.5 week into it was almost back to normal (only few of the high frequency hearing was still in the moderate hearing loss). But one thing was bothering me a week into the steroids. The pressure in the left ear, sort of numbness and fullness (it feels like im wearing a small tight helmet). I talked to my otolaryngologist about it and he doesn't know why I have this fullness sensation and doubts that it is related to the SHL. But after searching the internet for hours and hours about my symptoms., I suspect that I may have an acoustic neuroma. There were so many horror stories about this and the surgery (which seems to be a very tedious delicate one lasting about 9hours) may cause the patient to lose hearing and balance....I am so scared and nervous. I thought SHL was so bad but now learning about such thing is just so unsettling and driving me crazy.... the numbness in my left is almost gone (two weeks in post SHL diagnosis) but it is still there and I am waiting to get an MRI but I am delaying it because I don't have an insurance....This is fear is really taking a toll on my heart and as I read more and more on the internet about it the more I grow fearful.....I am truly dreading the MRI....more the result I might hear....
ReplyDeleteReading your blog was very informative and helpful, thank you so much for sharing your story. I just wanted to talk to someone about my situation as well...thank you for reading and prayers to you