Author Topic: I’m really scared-Update-  (Read 264 times)


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I’m really scared-Update-
« on: November 28, 2019, 02:09:24 pm »
I’m a speech-language pathologist and noticed my hearing was off and because I had a nasty bout of pneumonia, I just thought it was clogged.  I reached out to my primary care people who gave me a referral to an ENT, but they said they couldn’t see me until May.  I went ahead a got an audiological examination and the results indicated significant rollover in the left ear which can be indicative of a retrocochlear lesion and to get an MRI.  Has anyone ever heard of any other reasons of getting results like this on an audiological exam and it not be a tumor?  Obviously because of the holiday (Happy Thanksgiving!) I won’t hear from the hospital I guess until tomorrow hopefully to get a time for the MRI.  I have constant tinnitus that gets worse after being in noisy places.  It’s heard/feels like sound is just bouncing around in that side of my head like it’s lost in space.  Looking back, I am a little bit more unbalanced/clumsy. I’m really scared about how this is going to affect my ability to do my job.  I begged my primary care drs office to talk to the ENT about getting me seen earlier.  Thank you for taking the time to read.  UPDATE- It was confirmed I have an AN.  All I know is it’s 7mmx5mm on the left side.
« Last Edit: December 04, 2019, 05:45:17 pm by BeyondBelief »


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Re: I’m really scared
« Reply #1 on: December 01, 2019, 09:21:53 am »
Hi BeyondBelief,

Having heard from others on the forum who are early in on their quest to understand what could be causing symptoms, I dont think it is always an Acoustic Neuroma. But even if it is, take a deep breath and know that there are many many who have been through this, came out changed but still able to live an amazing life.

I agree with your plan to talk to your primary care doctors to get you into an ENT sooner, or even the MRI scheduled. If the MRI shows something, i cannot imagine an ENT waiting until May. I called each of the folks i was referred to and told them i was extremely anxious, requesting to move up the appointments. It worked, sometimes they had me see a different physician in the same office, but it cut weeks off of waiting.

My biggest fear was also about my job, but over a year after surgery, i am still doing well. I travel internationally, am in meetings / phone calls 6+ hours/day (yikes this sounds terrible!) and my career has not skipped a beat. Some times its more tiring, but i just make sure get the right rest.

Know you have a whole community of people rooting for you!

5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment


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Re: I’m really scared
« Reply #2 on: December 02, 2019, 09:09:42 am »
Waiting is such a scary thing. I wish I could offer advice to you to relax, but that only comes with time. 20 years later, all I can say is that the anxiety does absolutely nothing to change the situation, so it is wasted time. Big words coming from someone who was controlled by anxiety for years!  Keep us posted!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015


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Re: I’m really scared
« Reply #3 on: December 02, 2019, 03:08:05 pm »
So, I called my GP’s office this morning.  He is going to see me this afternoon to get a physical done and paperwork that’s required to get my insurance to approve the MRI. Update: I saw my GP and got to do my bloodwork at the hospital and they called before I made it home and I can get my MRI day after tomorrow!
« Last Edit: December 02, 2019, 06:49:44 pm by BeyondBelief »

Greece Lover

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Re: I’m really scared
« Reply #4 on: December 04, 2019, 10:39:22 am »
Good luck! Let us know what happens.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!