The "Lucky" Brain Tumor

In our culture, we treat medical professionals as authority figures. We often do whatever they say without questioning. While doctors are wonderful resources and extremely knowledgeable, you may not get connected to the perfect doctor for your diagnosis on the first try. It is super important to do your due diligence to choose the correct physician to treat you. It is not a situation where you want to go with good enough- it is literally the quality of the rest of your life on the line.

In many cases, when you are diagnosed with an Acoustic Neuroma you are then passed along to a neurosurgeon. However, all neurosurgeons are not the same. Acoustic Neuromas are considered a rare disease, and the average neurosurgeon may have only interacted with a handful of AN patients. Because there is so much neurological function at risk in treatment for an Acoustic Neuroma, it is extremely important that you receive treatment from someone who sees AN patients regularly. What does regularly mean? I would say if the surgeon does 40-50 of these surgeries a year that is enough to be considered fairly regularly. High volume AN treatment centers see 100 plus cases a year. Low volume would be a few a year- less than that I would absolutely not recommend. One of the largest predictors of the success of treatment is how experienced your team is.

When you struggle to get in and finally get to see a doctor, you may want to just go with the first one to get it over with. Often the anxiety is brutal during this waiting game between diagnosis and treatment. However, you truly do have some time for research with an Acoustic Neuroma diagnosis. Except in rare cases, you can take weeks or months to make decisions on treatment. If someone is trying to rush your decision, I would definitely get a second opinion as that is not typical (the caveat being that if you have hydrocephalus or a tumor over 5cm your circumstances could be more emergent). I know that feeling of just wanting to get it over, but it is worth it to do the research and make a decision that is good for you.

You may also feel a sense of disloyalty to be shopping around for doctors. Please don’t. You do not have to use a specific doctor or the first surgeon you are connected with. I feel like it is like shopping for wedding dresses- you have to try on multiple dresses to find the one that really fits. You may not even know what you want when you start, but trying several out will help you find the right team that fits you.

It can be hard to decide if you want to travel to a high volume AN treatment center or if you want to get more local treatment. I think it is important to weigh all the portions of the decision. It is the rest of your life, but you also have to find a way to make it all work. I personally chose a local treatment facility, but the team in my state who did the most Acoustic Neuroma surgeries. I am very happy with my results. I also know many people who felt they got amazing treatment traveling to the high volume centers- particularly those in California. Many of the high volume centers do free consults, so I would recommend at least doing the consult and getting the information so you can make an informed decision.

I know that choosing a doctor for brain surgery or radiation can be completely overwhelming. It is daunting to sort through so much information, especially if you (like me) are not a medical professional. This decision can have a huge impact on your life, and it is important to take the time you need to feel comfortable with the choice you are making. The Acoustic Neuroma Association has some wonderful resources, and I am linking to another article with ideas on how to find a good neurosurgeon. Please remember that your health is worth fighting for.

https://www.anausa.org/resources/healthcare/choosing-a-healthcare-provider

https://www.healthgrades.com/right-care/brain-and-nerves/8-tips-for-choosing-a-neurosurgeon