Hi everyone! I wanted to share my experience getting surgery (retrosigmoid) for my 2.2cm tumor with Dr. Friedman and Dr. Schwartz at UCSD on October 5 in case it is helpful to anyone. I am happy to answer any questions or elaborate on anything.
Background: I am a 33-year-old female and had virtually no symptoms of the tumor; it was discovered during a CT scan for an unrelated issue in June (I had a whooshing noise in my opposite ear, ironically they still don’t know what’s causing that). Because of the size of the tumor (2.2cm) and my age, surgery was an inevitable outcome, and it seemed like a smart decision to have it removed while my hearing was still fully intact (although I was still given a 50% chance of losing my hearing). I prepared for surgery by getting in excellent shape (Orangetheory 3-4x a week), eating a mostly anti-inflammatory diet (I’m also a vegetarian), and doing anything I could to relax and take care of my mental health (meditation, reiki, sound healing, massages). I wanted to go into surgery feeling physically, mentally, and emotionally strong/healthy, and made that my top priority the month leading up to it.
Surgery lasted 7 hours and went relatively well. It was scary going into it but I was asleep before the anesthesia mask even touched my face and woke up extremely loopy. My hearing was unfortunately not preserved, but luckily my facial nerve was unaffected despite being deeply entangled in the tumor (a surprising complication). They ended up leaving 20% of the tumor to save my face but feel confident that it was effectively devascularized (fingers crossed, I will continue to get MRIs to keep an eye on it). My hospital stay was comfortable and I was only there for 2 nights (including the first night in the ICU) before I was discharged. I am local to San Diego which made things easy, and I’m continuing PT at UCSD. I am really happy with my choice to go with Friedman and Schwartz, especially given the complication of my facial nerve which demanded their world-class expertise. I also have endless gratitude for the fellows and residents, as well as the hospital staff who knew exactly how to care for and rehab an acoustic neuroma patient.
The first 24 hours of recovery were the absolute worst with dizziness, nausea, and lethargy (I would literally nod off as the doctors and hospital staff talked to me). My first week home from the hospital continued to be pretty awful with dizziness and headaches, and I also felt a little depressed and was having disturbing nightmares. Everything got better once I stopped taking the narcotics around day 6. I slept a lot the first two weeks and watched all my favorite movies. Things really started to improve around day 10; my appetite came back, I started to feel more like myself, and could even do small tasks around the house. From there, I started to feel a little better each day, with the occasional setback.
Now at 4 weeks, I am feeling pretty good. I am no longer dizzy or nauseous, just a little unbalanced, especially in the dark. I am continuing to do PT exercises, I go on a daily walk, play Wii balance games, and have been doing things that are known to increase neuroplasticity, such as meditation, reading, and puzzles (also trying to cut down on screen time). I am not suffering from headaches but my skull is still numb (doesn’t really bother me, just feels weird). My energy has somewhat returned and I’m feeling more like myself each day. I’m not quite ready to resume work, exercise, or social activities, mostly because I am still getting used to single-sided deafness. To be honest, it feels like my whole perception of the world is now off and it’s been hard for me to adjust, both physically and emotionally. I’m allowing myself to grieve the loss while remembering that it’s not the end of the world and I will get used to it.
The only symptoms that still bother me are:
- Tinnitus in the affected ear, which I did not have pre-surgery. The baseline is a low buzz which is almost undetectable when it’s quiet, but as soon as there’s any noise it ramps up significantly and sometimes sounds like a brassy ’zing’. It’s making me hesitant to socialize because talking and laughing seem to aggravate it the most (ugh). I ~think~ it’s getting better but it’s hard to tell. The doctors said it should fade over time but I’m eager to hear about others’ experience.
- Ear pain, tingling, and occasional itchiness. My inner ear still feels like it’s inflamed or swollen. The pain gets worse when the tinnitus ramps up, and IB Profin seems to help. My PT said this should resolve once the nerves heal, but I’m also curious to hear about others’ experience.
From diagnosis in June, to surgery in October, and recovery thereafter, this has certainly been a crazy roller coaster of emotions but now I feel like I can handle anything life throws at me. This experience deepened my understanding of empathy and has taught me how I want to show up for my loved ones when they too face challenging times. As difficult and scary as this was, I am holding onto the belief that it will eventually lead to something more profound, especially if I focus on helping others who are going through something similar. I keep reminding myself that life might be a little different moving forward, but different doesn’t mean worse. I have gained new a new perspective, and thus, new possibilities. Life is what you make it, brain tumor or not.
Sending hugs to everyone on their acoustic neuroma journey. Much love.
