acoustic neuroma, jamis AN, vestibular schwannoma

The Journey Begins

Thanks for joining me! We all have stories. I will tell mine, lets see where it goes.

I was diagnosed this spring with a benign “vestibular schwannoma” (commonly known as an auditory neuroma).  This is one of the more common brain tumors, about 1/10,000 people have them.

It is not new – I have had this for years, but it hit a tipping point in Nov/Dec 2017. I could no longer attribute symptoms to just aging. After many doctor appointments, and finally a MRI with contrast, it was very clear that this tumor was taking space in my head.

The last few months have been about coming to peace with how I have changed, what my new normal is, how to prioritize what is most important in my life and what really matters, embracing that amazing tribe (near and far) around me.

More about the tumor, with the caveat I am NOT a doctor (but I google well). This tumor develops on the balance and hearing nerves in one’s inner ear. It typically presents on one side vs both sides of the head. It grew around my balance and hearing nerves, and then squeezed out of my inner ear into the part of the brain next to the ear.  Facial nerves hang out in those tights spots as well. As the tumor has pressed against those nerves, I have felt odd sensations which is what led me most strongly towards diagnosis. Most patients first notice vertigo or hearing loss, so my case is a bit different.

Removing the tumor is not the same for all, tumors have different levels of ‘stickiness’ to the nerves, some areas may be preserved if we remove others, etc.  Before surgery I made the request to preserve the facial nerve if possible, at the cost of the hearing and balance nerves (which is probably what they were going to do anyhow but it made me feel like the boss).

On August 12, the vestibular schwannoma was removed at the UNC Chapel Hill hospital. It was a 10.5 hour procedure. The length of the procedure was good, it meant that my brain was not swelling much, so they could continue to extract bits of tumor.

The giant sized peach pit tumor was 98% removed. We will monitor it and see how quickly / if it grows for the next few years. There is additional treatment available as well, which I can share in a later post.

It has been 11 days; some good days and some bad days. I am already very active. Taking walks, engaging with my family, and eating too much. I get headaches, terrible cold sores (from the tube in and around my mouth we think), and I get very tired.

I lost my hearing in the right ear (which is more than some others have, so I am grateful!), I have an ongoing (imaginary) noise in the right ear where my brain is listening but has nothing to hear. The more tired I get, the louder it is. Pain and discomfort gets stronger when I get tired. Resting is the key.

Concentration is much better. I look back over the last year and never realized how much I was struggling. I can hold a thought much better now than I could 2 months ago. I think it is tough for the brain to work through too much interference.

Overall, I expect to be at a new normal – in a great way – in a few months. Everyone heals differently.

Later date, I will update this blog, including How I Prepared for the Surgery, Updates as I heal, What Works and Doesn’t Work.

3 thoughts on “The Journey Begins

  1. Sara Del Grande

    I love your attitude toward this invasive life event. Reflecting on the journey, learning, growing, and making peace. Wherever your new norm takes you, you will do great. You are amazing. Much love to you.

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