Before I was diagnosed with a brain tumor I had the expectation that a medical diagnosis came with distinct instructions from a doctor on how to deal with the diagnosis. I assumed that someone with a medical degree would tell me what to do, not that I would be responsible for making the calls. I was wildly unprepared for the reality of choosing treatment when you have an acoustic neuroma.

There is essentially a large decision tree when you are diagnosed with an acoustic neuroma. First, you need to decide if you are doing watch and wait for the tumor or pursuing more immediate treatment. Then if you choose treatment, you need to decide if you are doing surgery or radiation. Once you pick surgery you need to choose your surgical approach. If you pick radiation you need to choose which type of radiation and how many treatments. In all of these situations you need to choose the right doctors and team for your care. (If you would like more details on choosing treatment or doctors see: https://luckybraintumor.com/2023/09/21/choosing-treatment-for-an-acoustic-neuroma/ https://luckybraintumor.com/2024/04/10/choosing-your-doctor-for-acoustic-neuroma-treatment/)

Some of these treatment decisions may be fairly obvious. Your tumor size and location may rule out certain choices. However, frequently you have at least a couple and more commonly several options available to you for treatment. The good and bad of the situation is that there are several good but not perfect treatment choices. Every choice has possible complications, after effects, and downsides.  However, by and large the treatments are successful.

It’s incredibly difficult to be the person calling the shot on these huge medical decisions that can impact the rest of your life. It’s hard feeling culpable for the outcome. But it’s also just overwhelming because in most situations the patient is not a trained medical professional used to making these calls. There is a lot of information to sort through and a lot of uncertainty for how your specific outcomes will turn out.

For me, choosing both treatment and doctors was some of the hardest parts of my entire journey. I chose surgery, which wasn’t too hard as watch and wait was clearly not a great fit for my 3cm tumor. Also, I was at the edge of having too large a tumor for radiation so that did not feel comfortable to me. But choosing my surgical approach was incredibly difficult. I really wanted to try to save my remaining hearing in my tumor side ear with the retrosigmoid approach. However, my doctor informed me he would be better able to save my facial nerve with a translabyrinthine approach. I wrestled with this choice for days, and called in my decision for the translabyrinthine approach while sobbing- knowing that I was making the call to wake up deaf in that ear. (My facial nerve was saved so eleven years later I still feel I made the right call).

There was definitely a relief once I had made all my treatment decisions. The ENT doctor who informed me I had an acoustic neuroma had given me great advice, “Make the choice that you can live with and don’t look back.” While I did not enjoy the agony of decision making, I do respect that the medical community is recognizing that I am the one who has to live with the outcomes of the treatment and therefore I need to play a role in choosing my path.

Some ways that I coped with decision fatigue along the way:

• I broke the big decision of, “How am I handling this tumor diagnosis?” into smaller pieces. Rather than focusing on the big picture, I would instead say, “I am going to schedule to meet with a neurosurgeon today.” Then the next day I would say, “Today I will read the Acoustic Neuroma Patient Information Booklets.” And so on. Doing that, I was able to slowly work my way through the decision tree. (Think Frozen’s Anna- Do the Next Right Thing).
• I would take breaks. It feels like your entire world is consumed when you get a brain tumor diagnosis. Luckily, I had a 2 year old child who would help me focus with important tasks like changing diapers. I would take breaks from the looming decision by focusing on the present.
• I set timelines to help me move along the process and not get stuck. I am going to call to schedule with the ENT surgeon by the end of the week. I will order my MRI copies by Tuesday, etc.
• I used different techniques to help ground me and stay present. For me, that meant time spent outside, exercise, making good food, and family time. Your list of activities may differ.
• I set small goals that I could check off to help me feel I was working on this situation but keep it from being overwhelming. Things like scheduling appointments, doing research, creating to do lists all helped me cope.

In the end, it’s a really hard decision. This choice will impact the rest of your life. However, there are other diagnoses that have no viable treatment options. In many ways, it is a privilege to have so many working treatment choices to wrestle between. Usually, an acoustic neuroma diagnosis isn’t an emergency, so you have time to deliberate and do your research. I wish I had a magic eight ball that could tell everyone the perfect treatment choice, but until I do, I am happy to answer questions and bounce ideas.