Chloe’s Story

Site created on October 23, 2021

In February of 2021, I was diagnosed with a vestibular schwannoma (also called an acoustic neuroma) which is a very rare (It affects fewer than 200,000 people and accounts for about 6% of all brain tumors) but benign (non-cancerous) tumor that sits on my vestibular and hearing nerve which is located by the entrance to my brain. Practically since birth, I have been dealing with hearing loss and imbalance. And now we know why! My doctors have advised me that eventually my hearing on my left side will be permanently lost without medical intervention and there is a chance my hearing will be able to be saved through surgery. On the flip side, this surgery could also compromise my hearing  as well as cause some facial paralysis. 

"Behold, God is my salvation; I will trust and will not be afraid, for the Lord God is my strength and my song, and he has become my salvation." - Isaiah 12:2

For more information of vestibular schwannomas: https://www.nidcd.nih.gov/health/vestibular-schwannoma-acoustic-neuroma-and-neurofibromatosis

Newest Update

Journal entry by Chloe Park

Hi friends!

Wow it's been a minute since I last updated ya'll. I am currently going through the cochlear implant evaluation process. There are a few steps involved. The first step is my ENT and audiologist both need to establish that medically I am a candidate for a cochlear implant. Then I will need to meet with a psychologist who works closely with the audiology team to determine if a patient is mentally prepared and has enough coping skills to deal with the stress and emotional and mental burden of living with a cochlear implant device and confirm that I am dedicated to staying persistent in my rehabilitation process. Finally, I will select which manufacturer I'd like to go with for the actual cochlear implant and then it's time to schedule surgery.

I'd be lying if I said this process wasn't daunting or intimidating. There are so many steps, so many visits, and many questions that my team is patiently answering. (My audiology team are real life superheroes and I couldn't be more grateful for their compassion and expertise.) And for awhile I questioned why God allowed me to lose my hearing. Why do I now need to go through another surgery? 

But recently, I've been getting direct messages from people on Instagram who are expressing that they are glad I shared my story on social media and they are newly diagnosed with hearing loss and are trying to rule out if they have an acoustic neuroma and if there's any advice I can give them about how to prepare for a major surgery and recovery. I even connected with one person who was also diagnosed with an acoustic neuroma and she told me my story makes her feel less alone and that touched me.

I always pray that God would use me to help others and make them feel like they are not alone in this world. Isolation, depression, and anxiety are real challenges for so many people and I just want to be a source of light and hope for them. I feel like perhaps God is allowing me to carry out my desire of helping others, even if it doesn't look like it's the way I originally anticipated. It's not easy to be hard of hearing, but when there's someone else who can relate to you and give you encouragement it definitely lightens the load.

So maybe the outcome of all of this isn't exactly the storybook picture I originally imagined, but I wouldn't trade it for anything else if it means I can soothe another person's soul.

Cheers,
Chloe 

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