After surviving a brain tumor, Jeffrie Anne S. could not believe she was diagnosed with an acoustic neuroma. After surgery, her acoustic neuroma was gone, but unfortunately, so was her hearing. Isolation and frustrating conversations led Jeffrie Anne to explore other solutions. Luckily, she was introduced to the Cochlear™ Baha® System:
“I am forever grateful…
In February 2010 I was diagnosed with what we thought was Bell’s palsy. Because I had a history of a meningioma brain tumor, my neurologist suggested we do an MRI just to be on the safe side. The MRI appeared to be all-clear, and my doctor sent me home reassuring me the Bell’s palsy would go away on its own.
About eight months later a friend said he thought I looked like I had a stroke. At that point, the paralysis was very slight and I had not really noticed a change to my face. However, I took my friend’s comments to heart, as it was around that same time I began to have a funny taste in my mouth, kind of salty and metal. I felt that it was better to be on the safe side and go back for a follow-up. The neurologist conducted a taste test, which I failed. She immediately sent me for another MRI. This time they found a schwannoma tumor, also known as an acoustic neuroma. It was pushing on my seventh cranial nerve, in my cheek area, causing my facial paralysis. Finally, we had found the culprit!
I was immediately referred to the ear, nose and throat department (ENT) at Talbert Medical. My appointment with my doctor came around, and he informed me that this was rather serious. He said I would need to meet with a surgeon. He referred me to a former colleague who now worked at USC University Hospital. I began to worry a bit about what I was in store for. It was only in 2006 that I had dealt with my brain tumor diagnosis, now this!
I tried to remain calm and thankfully, I wound up in very capable hands of my doctor who performed my mastoidectomy surgery. In addition to removing the tumor, he did an ossicular chain reconstruction, along with a nerve graft, in hopes of repairing my facial paralysis. Before surgery, I was told there was a good chance I would lose my hearing, depending on how much of the ear canal was involved and because of the drilling during the eight-hour surgery. Surgery went well, and thankfully, the tumor was benign, but my doctor confirmed that I would have hearing loss in my right ear.
Healing and hearing loss
During the healing phase, my journey continued with hearing tests that confirmed I did in fact have single-sided deafness (SSD). My new norm now involved bimonthly visits to the ENT. My new rebuilt ear canal was now bigger than before. Since I could no longer get it wet, it was prone to infections and required cleaning and drops. Because of the misdiagnosis early on, my paralysis was considered a 4.5 on a scale of 6, and we were not noticing any real improvements from the nerve graft. I eventually wound up having a mid-face lift and had a weight put into my eyelid in order to close my eye.
I learned how to adapt to my hearing loss by leaning into conversations and saying ‘what?’ more frequently, often followed by nervous laughter (since half the time I still did not know what was being said). I also took a tape recorder to all of my appointments so I could replay every detail of what the doctors told me about my situation. This went on for a few years.
My doctor remained hopeful that my hearing might return, so I agreed to one more ear reconstruction surgery. Unfortunately, the second ear reconstruction did nothing to improve my hearing. After all I had been through, I pretty much resigned myself to a quieter life spent in more intimate settings to maximize my hearing. I allowed myself to grieve for my face and hearing loss, but ultimately was so grateful to be alive that I just tried to remain positive.
When I went for my follow-ups with my doctor and ENT, they had both mentioned that I might want to consider getting a hearing device. Eventually I was persuaded to test the Baha® 5 Sound Processor and Baha® Softband in the office. It was so cool to be able to hear again! Since I was still not 100 percent convinced to have another surgery, she suggested I get involved by attending a Cochlear meeting in my area.
An eye-opening event
Through the Cochlear website, I made contact with the local Cochlear Engagement Manager, Maeve B. She informed me that they were having a Cochlear Family Reunion, and she thought it would be a great idea if I attended. I am so glad that I did!
Along with Maeve, I got to meet a roomful of Cochlear reps, Cochlear recipients, Cochlear Family members and curious potential recipients like myself. It was an amazing day! I got to wear the Baha 5 Sound Processor on the Baha Softband for an extended amount of time; I could actually carry-on a conversation with someone across the table from me….that had not happened in years! I was so moved by the event, it made me realize I did not have to live the life of self-imposed isolation. I decided to talk to my doctors about getting the Baha Implant System.
I got my abutment surgery for the Baha Connect System in March 2016 and I was activated in June 2016, and I do not regret it for one minute! On my activation day, my mom and Pa Steve were there. Pa Steve is soft-spoken, so I used his soft tone as a hearing gauge. If my doctor could make it possible for me to hear Pa, I figured I could hear anyone. I cried when I could hear him again! Also, I turned my back and stepped out of the room and could still hear them all back in the office.
The weirdest event that day was driving on the freeway. I could literally hear the tires making a flapping noise as they hit the pavement. I never remember them being so darn loud! Eventually that would all correct itself once my brain figured out how to compute sound again for me. But, for that day, I could live with louder than usual tires! I felt so blessed and thankful!
Back to my old self
Since my activation day, I am back to my old social self. I enjoy traveling, going camping with friends and listening to music. The first time I attended the Festival of Arts and Pageant of the Masters with my Baha was amazing! I cried tears of joy when I could hear all the nuances of the orchestra; it was magical!
Occasionally, I use the Cochlear™ True WirelessTM Mini Microphone 2+; I particularly like it in a noisy restaurant or bar when I am in a large group. I am so thankful to all of the folks that I have met through Cochlear. Through this experience, I am now a Cochlear volunteer. I love making new friends and sharing my experience with potential recipients. Looking back, I realize I was withdrawing from life because of my hearing loss. The Baha System gave me hope to live my life to the fullest, loud and clear!”