Life Letters: On Being Cautiously Optimistic

Life Letters: On Being Cautiously Optimistic. The next chapter of my acoustic neuroma recovery journey. via www.twopurplecouches.com

It’s been a while since I’ve shared a health update, but there have been appointments and decisions filling up my calendar and my mind all summer. My last post was about my surgery and recovery (if you have no idea why I had surgery, it was to remove an acoustic neuroma tumor from my inner ear/brain). I had just started therapy to help me regain my balance and loosen up my neck muscles. I attended therapy sessions for a few weeks and by the time I was released, I was feeling about 85% – 90% back to normal, or at least my new normal.

While inner ear/brain surgery doesn’t leave any of your limbs in a cast, it certainly does a number on your balance. And your neck muscles. It took me a few weeks to get to the point of being able to walk a straight line and turn my head side-to-side without running into a wall. I still have moments when I turn too suddenly and walk right into a wall or door! Anyway, my point here is, if you’re ever prescribed physical therapy following surgery, DO IT! It’s super helpful. And you might even get a weekly neck massage out of it (wink).

Three months after surgery, near the end of July, I had a hearing test and follow-up appointment with my audiologist and otolaryngologist at UC Health. The hearing test proved what I already knew—all hearing ability is gone from my left side. I’m totally deaf in that ear. But the right side is good and appears to be working as it should.

At that appointment, my otolaryngologist told me that I do have a couple of options for hearing aids. A few weeks later I went back to see my audiologist to talk about those options. The first is a more traditional hearing aid system—the Phonak CROS II and the Audeo V. I would wear these externally, one on each ear: the CROS on my deaf side and the Audeo on my good side. The CROS essentially works as a microphone, picking up sounds on my left and wirelessly transmitting them to the Audeo receiver on the right, allowing me to better hear and follow along with sounds and conversations on my left side. While it probably doesn’t seem like single-sided deafness is all that different from hearing with two ears, it is. Especially in a public space: a bar, a restaurant, a party. It never fails, every time we go out to each, the waiter or waitress ends up on my left side, asking to take my order and sometimes I can’t hear when it’s repeated back to me. Even taking our dog for a walk, the hubs needs to walk on my right side so I can hear our conversation.

Hearing Aid brochures for Phonak CROS, Phonak Audeo, Cochlear Baha

The second hearing aid option for me to consider is an implant—the Cochlear Baha system. The way this works is with two pieces: a small titanium piece implanted under the skin behind my left ear that fuses to my bone, and an external processor that connects to it (either magnetically or with a metal snap). This processor uses bone conduction to send sound directly to my inner ear. An implant means another surgery and recovery period before it can be hooked up.

I was able to test this option out for a weekend by wearing just the external processor on a headband. It didn’t seem to make all that much difference to me, and right now I’m undecided on which option I want to pursue, if I pursue either of them. The traditional hearing aids feel like less of a commitment; I can return them if they don’t work for me. But I have to pay for them out-of-pocket (they cost several thousand dollars). The implant seems like such a big commitment, and if I don’t like it, then I’d need to endure another surgery to have it removed from my skull. The upside is that insurance typically covers 100% of this cost (which can run up to $40,000!). So, until I make a decision, please sit on my right side so I can hear you best (wink).

The last piece of this whole crazy ear tumor puzzle was waiting on the results of genetic testing. Sometimes these tumors are caused by a disease called Neurofibromatosis Type II (NF2). A portion of my tumor and blood samples were flown down to The University of Alabama at Birmingham Department of Genetics to be tested for NF2.

Earlier this week, I saw one of the geneticists at Children’s Hospital here in Cincinnati to review the test results. The easy explanation is that my tumor tested positive for NF2, as it was expected to because that is where the cells mutated, and my blood work tested negative. Cue huge sigh of relief! The doctor wants me to have a precautionary spinal MRI to rule out the possibility of other tumors forming along my spinal nerves (NF2 causes benign tumors to form along the head, neck and spinal nerves). I will already be having another brain MRI later this year to follow up on how things look post-surgery, so this spine scan will just be added to the list.

Acoustic-Neuroma-AN-Superhero

In the title of this post, you’ll notice I said I’m being cautiously optimistic. I feel like I won’t be 100% relieved until after my brain and spinal MRI. There is always a chance, no matter how slight, that something else could be forming. I mean, this tumor was forming in my brain for years and years and I had no symptoms until recently. While the geneticist was very reassuring that a spine scan is more of a precaution than anything else, you just never know. I’m the type of person that likes to be prepared for the worst. It’s my way of coping. This may make me sound like a Debbie Downer, but it’s the way I see things. If I run through all of the tough scenarios, I’ll be that much more relieved about a clean bill of health. Which of course, is what I’m hoping for!

I know this post has gotten long, so if you’re still reading, thank you! Thank you for letting me give you an update and get some of my feelings off my chest. Also, if you or anyone you know has any experience with the hearing aids I mentioned —the Phonak CROS II, the Phonak Audeo V, or the Cochlear Baha implant—I would love to hear about your/their experience! I know hearing aids are programmed differently for each person, but I would love to hear whether it’s been an overall positive or negative experience, or what you wish you’d known beforehand! Please leave me a comment here or even shoot me an email at twopurplecouches@gmail.com

Thanks, as always, for listening 🙂

6 thoughts on “Life Letters: On Being Cautiously Optimistic

  1. Theresa

    Glad to hear (yuck-yuck!) that you’re still on the path to recovery! I’m sure you’ll find the best hearing aid for you and I’m sending positive vibes your way for your upcoming MRI!

    Reply
  2. Tom Kennedy

    Emily,
    Thoughts, prayers, and our love continue for you and Tom. We are just as anxious as the both of you are for good news on the brain and spine MRI.

    Love,

    Linda & Tom

    Reply

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