I was a little shaky heading into my first-ever visit with a neurosurgeon. My husband left work to meet me at the office and to be my back-up ears, voice and shoulder to cry on. We liked the doctor’s demeanor right away. He laughed and said, “I heard you diagnosed yourself with an acoustic neuroma!” Since I had already spent the last two weeks researching everything about it, I knew most of what he was about to explain to us. He pulled up the MRI images and confirmed some of what I knew: that I had a 3 cm tumor, which was considered “large” and would require surgery. (Radiation alone is only an option when the tumor is considered small or medium.) What I wasn’t yet sure of, but that was also confirmed by the images, was that the tumor was significantly pressing into the brain stem and cerebellum, which can cause a disruption in the flow of cerebral-spinal fluid, and be life-threatening. The doctor went on to explain, without any sugar-coating, that I would lose my hearing in my left ear, and that a tumor this size would likely cause facial paralysis on my left side. (It could be temporary or permanent.) My left eye could have problems closing on its own because I’d have no muscle control, so it would dry out and I’d have to put drops in all throughout the day to keep it lubricated. I could have problems swallowing. I could have problems eating, to where food could be falling out of my mouth, which can lead to social isolation and depression. My smile wouldn’t show on my left side. (I have a huge smile and always try to smile at everyone I see. People know me by my smile, and that is truly part of my identity.) This last bit of news might have been the straw to break the camel’s back. I sat through the whole appointment nodding, asking questions and holding myself together, but then I needed to let the overwhelming build-up of tears OUT. I sat sobbing for a little longer while we discussed the logistics of scheduling. We talked about getting second opinions from Stanford and/or UCSF, which he supported. He had performed many brain surgeries and had an impressive background profile, but because it’s such a rare condition, I don’t think he had too many acoustic neuromas under his belt. He said, “a brain tumor’s a brain tumor.” So…while that may be true from the surgeon’s standpoint, it sounded a little less comforting than what we wanted, so we kept our options open, with hopes of finding a specialist.
We scheduled an appointment at Stanford a week or so later with a neurosurgeon, Dr. Chang, who specializes in acoustic neuromas. We only live an hour away, so we were thrilled to meet him. He had a friendly demeanor and took his time explaining the situation and answering our questions. He shared all of the same information as the last doctor, but his emphasis was different. He seemed quite passionate about preserving that facial nerve, and explained that the best way to know how much the nerves can handle during the procedure is to have already been in that situation many times. Depending on the tumor’s adherence to various nerves, they would remove as much as possible in an attempt to protect the nerves, and may choose to leave a small amount. That small amount is unlikely to grow again, but it would be monitored annually and could be radiated eventually if it did.
Dr. Chang also emphasized how we would have a care team of neuroscience-specialists from beginning to end (anesthesiologist, ICU, post-op nurses, etc.). There would also be a second surgeon, an ENT specialist. At this visit I had no urge to break down crying, possibly because I had had more time to process the news, but also because I felt like I was in the right hands. The surgery would be an “all-day affair” from approximately 8 am to 6 pm. He thought that the retrosigmoid approach was the more likely choice they’d make, as it provides easier access, but it does require compressing the cerebellum. The cerebellum can get “pissed off” though and cause a whole other potential set of after-effects, so that’s the downside of that procedure. The translabrynthine approach was a secondary option, but it does require four hours of drilling through bone before they can even access the brain, and I think that alone can come with its own set of after-effects too. He instructed us to have a consultation with his ENT colleague, Dr. Blevins, and then we could schedule surgery as soon as they could pull the team of specialists together. The soonest we could get in with him was two MORE weeks!
So…two weeks later we met with Dr. Blevins, and loved him. He explained in detail how exactly the facial nerve is at risk. If I interpreted correctly, it runs across the front of their access to the tumor, and is as thin and nearly invisible as a strand of hair, so you can imagine how easily it could be damaged during surgery. In order to see it and protect it, they stimulate it electronically so that they can see its movement and work around it. He also explained that his ENT team would begin the surgery, starting with the portion in the ear, and then Dr. Chang’s neuro-team would take over the portion at the brain. He felt the same as Dr. Chang with regards to feeling equal about the pros and cons of either procedure. Because I had only lost 25% of my hearing, in most cases they might opt for the retrosigmoid approach to try to preserve the remaining hearing, but they said that with the size of my tumor the odds are low that it could be preserved anyway, AND they’d have to compress the cerebellum. Knowing that my mom has had only one working ear most of her life, the thought of losing hearing in one of my ears didn’t bother me at all. My willingness to sacrifice the rest of my hearing in the left ear sealed the deal for both surgeons agreeing on the translabrynthine approach for me. So…hearing loss in one ear is guaranteed, and facial paralysis for some amount of time is highly likely, but at least my cerebellum will thank for me it.
*Additional note for anyone reading this who has been diagnosed with an acoustic neuroma: I strongly encourage you do as much research as you can before your appointment. My husband and I found it helpful to create a shared Google Doc in advance, and we both added all of the questions that popped into our heads, leading up to the appointment. You can definitely round out your own list with more suggestions if you do a Google search for “Questions you should ask your acoustic neuroma surgeon.”
Here are some from our list, in addition to more that we found online:
- Which procedure would I be having (retrosigmoid, translabrynthine, middle fossa)?
- How long is the hospital stay? Which hospital would I be in?
- How soon/far out could we/should we schedule it?
- What is the expected recovery times for different activities (driving, exercising, working)?
- Should I expect to need care at home after my hospital release?
- Based on my specific tumor size and location, what are the biggest concerns post-surgery? (i.e. facial paralysis, hearing loss, double vision, sense of taste)
- Which surgeon in the area has the most experience in acoustic neuromas?
- How long would the surgery take?
- Would there be a second surgeon present?
- Is the anesthesiologist a specialist in neuroscience? \
- Who will verify our insurance coverage and how long does it take for approval?