Erin Fortner

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19/06/2024

Grape 🍇 You?

18/06/2024

Many people who have an acoustic neuroma have no symptoms.

For those that do, it’s typically a combination of the following:

👉 Tinnitus or ringing in the ear
👉 Hearing loss
👉 Dizziness
👉 Balance issues
👉 Facial numbness or paralysis

The hearing loss and tinnitus are unilateral (only in one ear) and can come on suddenly or over a period of time.

If the tumor becomes large enough it can press on nerves causing numbness and/or paralysis.

I had the first four symptoms for over a decade and developed facial numbness in August.

What were your first symptoms?

17/06/2024

It’s Acoustic Neuroma Awareness Week!

What is an acoustic neuroma?

An acoustic neuroma, also known as a vestibular schwannoma, is a rare non-cancerous (benign) brain tumor.

They typically grow on the vestibular nerve which is part of cranial nerve VIII (8). This nerve contains the vestibular nerve, which is responsible for balance, and the cochlear nerve which is responsible for hearing.

The most common symptoms are:
⭐️ Unilateral (one sided) hearing loss
⭐️ Unilateral tinnitus (ringing in the ear)
⭐️ Imbalance/disequilibrium
⭐️ Dizziness/vertigo
⭐️ Headache
⭐️ Fatigue

Treatment options include: observation, radiation therapy, and surgical removal.

Each patient is different and the best course of action depends on tumor size, symptoms, and patient health.

10/01/2024

Osia update!

I’ve had my Osia 2 processor for 6 weeks and, overall, I love it.

I thought I’d do a pros and cons list for anyone thinking of getting an Osia.

⭐️ Pros ⭐️
- I can pick up sound on my deaf side again!
- I have better understanding and clarity of speech.
- It’s comfortable to wear.
- The magnet holds it on pretty well (but I still always wear the hair clip for extra security).
- I can stream sound directly from my phone to my implant.

⭐️ Cons ⭐️
- My hair runs against the mic and makes noise.
- I pick up the wind with my mic and have to move my head around until it stops.
- Sound localization is better but not great.
- Listening fatigue is still a thing.
- I have to change the battery every few days.
- Other people can hear the sound coming out of the processor. It’s definitely not private!

I’m honestly very happy with it. The cons are not deal breakers, but I wanted to put them out there for anyone who is thinking about getting an implant.

What questions do you have?

01/12/2023

I’m all done!

I had my final follow up today.

It’s been quite the journey with this .

Diagnosis in Sept 2022.

Surgery to remove the tumor in Jan 2023.

Surgery to repair a CSF leak in Feb 2023.

Surgery to place an Osia implant in Nov 2023.

I’m excited to put this all behind me.

I have so many cool things that I’m working on and I can’t wait to share with all of you!

01/12/2023

I can hear again!

It’s been 11 months since I lost my hearing due to surgery to remove an acoustic neuroma brain tumor.

3 weeks ago, I had surgery to place a Osia 2 implant and today I got the external processor that allows me to hear.

First impressions 👇🏻

The microphone on the processor is strong and picks up sound very well. It's not the same as natural hearing. The sound is kind of like hearing sound picked up by a mic through earbuds.
The mic works so well that I pick up the sound of my hair rubbing against it. If I turn the volume down, I'm no longer able to hear my hair. I may consider keeping my head shaved and wearing my hair pulled back so I don't have that problem.
Though I pick up sound on my left side, I hear through my right ear. This may sound obvious since this is what this implant is supposed to do but it's a strange sensation.
The magnet is strong but the implant can easily be dislodged. I accidentally knocked it off when I tried to put my hair behind my ear and lost it under my car seat. It comes with a hair-clip tether which I will always use because I'd be terrified of having it fly off and not be able to find it.
I can stream audio directly from my iPhone to my Osia. So, I can watch shows, listen to music, or take phone calls without headphones. This was the thing I was most excited about. What I didn't anticipate is that other people can also hear the sound coming from my processor.

I'll update more later on as I learn to live with this new gear.

13/11/2023

2 weeks until I can hear again!

I get the external processor to my implant in a couple of weeks and I’m pretty excited about it.

The surgery site for my implant is healing really well for which I’m grateful.

I’ve had so many great questions that I thought I would answer some here.

✨ Do you have any hearing in that ear? No, I am completely deaf.
✨ Did insurance cover it? Yes! It was completely covered by insurance.
✨ Will you be able to locate sound? Not exactly. You need both ears to be able to determine the direction of sound, but I have heard that it’s possible to train yourself to get better at it.
✨ Will it help with tinnitus? It’s possible that it can help with tinnitus.

Any other questions? Drop them below.

07/11/2023

My new barber is terrible. 😂

03/11/2023

The Osia 2 implant surgery was a success!

I have to keep this lovely compression bandage on for 48 hours. It’s compressing my ear, which is causing more discomfort than the incision I think. I also have to sleep elevated for the next few days to reduce swelling.

I’m supposed to relax this weekend (I’m having a tough time with that already!) and take it easy for the next week. My surgeon specifically told me not to hike or climb. He knows me well.

This part is the surgical implantation of the implant; I have an appointment in 3 weeks to get the external processor which will allow me to hear.

I can’t wait!

01/11/2023

I’ve been working on some things that I’m really excited about.

One of those things is that I’ve become a Board-Certified Patient Advocate!

I’ve been a patient advocate for close to 15 years and am thrilled to have earned this credential.

I’m putting the finishing touches on some other exciting projects and will have more to share soon!

02/08/2023

One year ago today, the left side of my face went numb.

Never a good sign.

In the year that followed, I was diagnosed with a large acoustic neuroma brain tumor, had two brain surgeries, and became single-sided deaf on my left side.

There's been loss, sure, but I've gained so much more.

I have my life back.

Tonight, I conquered a climbing route that I've been trying to top for weeks.

I can't think of a more fitting way to commemorate this day.

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19/06/2024

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