The Journey Begins

Thanks for joining me! We all have stories. I will tell mine, lets see where it goes. I write this 11 days post surgery.

I was diagnosed spring of 2018 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 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 pressed against those nerves, I felt odd sensations which finally led me to doctors appointment. Most patients first notice vertigo or hearing loss.

Treating the tumor is not the same for all. Some people will monitor the tumor to see if it grows, others select radiation and still others have surgery. Due to size and symtoms, I selected surgery.  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.

Most of the giant sized peach pit tumor was removed. We will monitor it and see how quickly / if it grows for the next few years.

11 days post surgery, I have had both good and 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, I have an ongoing (imaginary) noise in the right ear where my brain is listening but has nothing to hear. As I tire, the noise gets louder. Resting is the key.

Concentration is much better than before surgery. I look back over the last year and never realized how much I was struggling. . 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.

3 Comments

  1. 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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