One of the most challenging parts of the Acoustic Neuroma journey is making choices regarding treatment. I was shocked to learn that my doctors expected little-old-me-without-a-medical-degree to decide my treatment path. I felt like someone with more experience in medicine should be telling me what to do. It was completely overwhelming.

So here is my best advice on picking your treatment for a Vestibular Schwannoma tumor.

First off, I am not a doctor and everyone’s tumor is so different. Your situation may be wildly different depending on tumor size, location, and your symptoms.

Always always ALWAYS get multiple opinions if at all possible. Typically, if your tumor is under 5cm you have some time and this isn’t a super rush emergency (despite feeling like one). Take some time to do some research, talk to multiple doctors, and explore options. Don’t push it under a rug for the next five years, but usually you can take some weeks/months to make a plan. These are typically slow growing tumors so it isn’t ultra time sensitive. Keep in mind though that the larger it gets the more challenging to treat, and also that neurologic function that is lost doesn’t necessarily return.

There are multiple doctors in the US who will provide consults for free, such as UC San Diego and the House Clinic. Even if you do not intend to travel for treatment you can always get a free consult and get more information. I also highly recommend seeing doctors who treat these tumors regularly. These are rare brain tumors and you don’t want to be the 5th case your doctor sees. I feel that a team that treats at least one of these types of tumor a week would be a good qualifier for experienced.

The first big crossroads in decision making is treatment right away or watch and wait. Typically, your tumor size will weigh in heavily on your choice. If your tumor is below 1.5cm your doctor may advise watching to see if it grows. Keep in mind that some treatment options (such as Middle Fossa surgery) also have a size cut off limit. Also, your mental health and well-being play a key component in this choice. Some people can watch and wait fairly comfortably, while for others the anxiety is excruciating. Choose what is right for you and your situation.

The next big decision tree, assuming you choose to proceed to treatment, is picking surgery or radiation. Again, tumor size comes in to play. Doctors will not radiate a tumor that is over 2.5cm or 3cm depending on the doctor (because tumors swell after radiation and if your tumor is too large that will put too much pressure on the brain). Also, age is a large factor in choosing radiation. Some doctors will not offer it if you are too young, others will recommend it because you are young. There really doesn’t seem to be a consistent message on age at this time. Another key component in the decision can be the tumor’s proximity to your facial nerve. Your facial nerve controls blinking, swallowing, smiling, moving your face, is involved in taste and tongue function, and lots of other things you really want to work. Some doctors will recommend radiation to keep the facial nerve safe. Your amount of hearing on the tumor side may play into your decision on treatment also. Though I would caution you to look at the overall picture and other factors listed above before prioritizing hearing for your decision making. It is a factor, but I wouldn’t give it the top place as most Acoustic Neuroma warriors end up with hearing loss with any kind of treatment.

If you choose radiation there are radiosurgery treatments such as Gamma Knife and CyberKnife that are one- five time treatments. There is also fractionated radiation treatments where you receive doses of radiation over a period of time, such as 28 days. Again tumor size and location play into your options.

If you choose surgery, the next fork in the path is which surgical approach to pick. There are three options: Middle Fossa, Retrosigmoid, and Translabyrithine. Middle Fossa typically has the best hearing preservation but can only be done for smaller tumors. Retrosigmoid is the second best for hearing preservation but is associated with an increased risk of headaches. Translab can have the best facial nerve preservation or viewing, but the approach destroys the hearing structures on that side so it results in single sided deafness. Again your particular tumor size and location may make one of these a better fit for your particular situation.

For my situation, I was diagnosed with a 3cm tumor. I met with both radiation oncologists and surgeons. Ultimately, I did not feel comfortable being on the very edge of size allowed for radiation. I also lived a long distance from medical facilities and worried the delayed side effects of radiation would be nerve racking being so far from a doctor. I wanted the closure of knowing the tumor was removed. I felt the anxiety of receiving radiation and waiting for a scan to confirm no new growth or shrinkage would be too stressful. I worried about long term effects of radiation on the brain since I was 27 years old at the time. I chose to pursue surgery.

I did see several surgeons before settling on my team of a neurosurgeon and an ENT surgeon that I felt comfortable with. Once I chose the team, the doctors debated whether to do the retrosigmoid or the translab approach and left the decision up to me. I struggled so hard with making the call to lose all my hearing in my tumor ear, despite having already lost 90% of my hearing in that ear by the time my tumor was diagnosed. The neurosurgeon told me he felt he could better preserve my facial nerve with a translab approach, so I made the decision to do translab. That day was probably the one that I cried the most throughout the entire journey. Being forced to make the call myself was really hard. However, I ended up having great results with the tumor fully removed and my facial nerve retaining perfect function. The doctors told me my hearing nerve was barely hanging on by a thread, so not matter what treatment I had chosen I would have been single sided deaf. It may also have been a little easier to go into the surgery knowing I would be single sided deaf after, rather than hoping to retain my hearing and finding out it was gone after surgery.

It can be so incredibly challenging to sort through all this and make a treatment choice. However, the good news is that really there are a lot of good treatment choices (comparatively speaking). In the scheme of brain tumors and big medical issues, the treatments for Acoustic Neuromas are well researched and proven to work well. So at least if there isn’t a simple or glaringly obvious right choice, there are solid options.

The best advice given to me in this situation: make the choice you can live with and don’t look back.