An acoustic neuroma or vestibular schwannoma brain tumor grows on the vestibular nerve. The inner ear houses really important balance structures that send balance information via that vestibular nerve to the brain. Typically, an acoustic neuroma impacts the vestibular nerve function.

I did a bunch of vestibular tests after my acoustic neuroma diagnosis. I honestly had no idea what to expect for vestibular function tests. One of these was closing my eyes and marching in place. I was shocked when I opened my eyes and found I had turned significantly! Another was wearing special goggles to track my eye movements while shooting different temperature water in my ears. I couldn’t believe how this procedure made me feel like I was on a roller coaster when performed on my healthy side. When it was done on the tumor side, I didn’t have any movement sensation. I also did several other eye tests, including where I stared at dots and moved my head while wearing a device to track my eye movement.

During my surgery to remove my acoustic neuroma tumor my vestibular nerve was cut, as is common for many acoustic neuroma patients. It can vary a lot for people with acoustic neuromas, whether their vestibular nerve has already ceased functioning from the tumor prior to surgery, or if their vestibular nerve is giving faulty information to the brain before treatment. My doctors informed me that I would have the greatest difficulty with balance right after surgery as my brain would be confused when it no longer received information from the tumor side nerve. However, my brain would start to compensate and focus on the information it got from my eyes, proprioception, and my remaining nerve. Over time, this compensation process would help my balance improve. I found that to be accurate, but vestibular rehabilitation both increased the speed of compensation as well as how much balance I was able to get back.

 I was very nauseated and motion sick immediately after surgery. When they first got me up and walking the day after surgery, I felt as wobbly as Bambi on the ice. The physical therapist had me stand on a pillow and I tipped right over. Those first few days I felt like a rock star just being able to walk laps around the neuro icu with a spotter.

When I was released from the hospital, I felt that I could walk slowly and carefully in a well lit room with a smooth floor, but I wouldn’t put my balance up to anything much more difficult than that. I was discharged from the hospital right into vestibular rehabilitation sessions.

Vestibular rehabilitation or therapy is typically broken into three methods: habituation, gaze stabilization, and balance training. Habituation is essentially bringing on the symptoms like dizziness and teaching your brain to cope and work past it. This is really useful for situations that bring on dizziness like grocery shopping. Gaze stabilization is training your eyes so that even when you are moving your vision stays clear. This is helpful in situations such as if you feel like things bounce around when reading. Balance training exercises help you strengthen your body to increase your balance as you do daily living tasks, such as walking on uneven ground. I participated in all three methods of vestibular rehabilitation.

Upon arriving at my first appointment, my therapist was impressed I was able to walk unassisted at that time, given my case notes. However, we hit the ground running and I gained back so much function. I did a variety of different exercises, mostly focusing on my vision. He taught me tricks to use, like looking forward and slightly down and picking a spot to focus on. He had me doing things like staring at a dot while moving my head. This got harder each week- progressing from a chair to an exercise ball while doing this exercise. He would have me start a new exercise in bright light and slowly dim the light over weeks to make it harder and keep practicing. He had me doing some of these exercises while standing on a pillow, because losing contact with the floor made it harder. He focused on ankles, knees, and core muscles, as these all play a large role in balance. Each week we discussed where I was at and what I wanted to achieve. Every appointment we upped the level of the challenges. By the time I was discharged from vestibular physical therapy at six weeks after surgery, I was back riding my bicycle, which was a very important and exciting goal for me.

In contrast, my mom had a different type of benign brain tumor several years before my diagnosis. Her brain tumor impacted her brainstem and so it affected her balance also. She was not offered any kind of vestibular therapy. She made some progress in recovering her balance but it was pretty limited for her going forward. I wish she had been connected with a vestibular therapist. I truly believe it would have made a big difference in her quality of life.

Some areas have less availability for vestibular therapists. I have heard from others that they struggle to find a vestibular therapist, or that they can’t get an appointment. I know some people have found success by tracking down a vestibular therapist before they get treatment for their acoustic neuroma. It can be helpful to do some vestibular therapy before treatment and having that resource ready to go after surgery is great. Not every treatment center has this pathway set up for aftercare. It is important to work with a vestibular therapist and not just a standard physical therapist. There are also a lot of new and exciting virtual applications to help with vestibular rehabilitation.

If you have any balance challenges, I super highly recommend looking into vestibular rehabilitation. It is worth the effort. Balance is hugely important for your entire life; it’s a great investment in your own well-being.

You can find more great info here: https://vestibular.org/article/diagnosis-treatment/treatments/vestibular-rehabilitation-therapy-vrt/