Hi, Forecast. I am so sorry you have an acoustic neuroma to learn about, when starting a family and so many other things are more naturally front and center. It's a sucky diagnosis, but hopefully it is only a speed bump in life.
I am long time member of the club, frequent reader of posts, but very infrequent poster here. Your story has several things has several similarities and things I can relate to, so I thought I would chime.
When I was 40 (in 2010), and with a newborn baby (my second), my AN was discovered due to balance issues, headaches and a sudden numbness in my cheek. It was large (3.25 cm), growing in the IAC, had some brain stem compression, and I was told by three different AN specialists (Mayo, University of Iowa and House) that it had to come out and there was no chance of hearing preservation. In my case, I opted for trans-lab approach so knew going in that the hearing nerve would be cut to provide the best access to the tumor, and to provide the best chance at preserving the facial nerve, which was a primary goal of surgery.
Fast forward to December 2021, I am now 52 and the [insert really not nice word here] tumor is back and bigger. In December 2021, the tumor was similar size to the original (3cm), surgery was scheduled for April 7 2022 - I could have done it sooner, but staying with the idea of them being slow growing, kids birthdays, first spring break trip since covid, April it was. In mid-March, headaches were persistent, neck pain was constant, and I generally was freaked out that I would go to sleep and not wake up. An MRI in March had my AN at almost 4cm at it's longest point, with significantly increased brain stem compression. Not only was is supposed to be one and done lifetime event, but my tumor was clearly not slow growing, or had a healthy growth spurt.
From 2010 surgery, waking up being SSD, totally removed balance nerve on AN side, and facial paralysis, it was most definitely tough. I was a nursing mom, and that was also tough potentially letting that go (I was able to nurse once off heavy pain meds, but supplement with formula because my supply was not enough). I was back to work five weeks post-op, and able to pick up my baby six weeks post-op.
In the time between 2010 and 2022, my facial paralysis improved quite a bit - it was a very slow process. By 2013 I had total eye closure, some spontaneous blink, had learned to relax my facial muscles and had a small, albeit uneven, grin.
Waking up from surgery in April, I was never nauseous (the first time I puked for 3 days), and my physical recovery was much better. By two weeks post-op, I was walking 2-3 miles a day, and was cleared to go back to work and for all normal activities at 4 weeks post-op. My facial nerve, however, is the sleeper of the story. I have no movement on my AN side yet, my eye only closes about 80% of the way which means constant cornea care. My right side of my face is saggy. Team of doctors is monitoring the nerve healing and muscles, with more surgery in the future a possibility to perform nerve grafts to give my face symmetry, spontaneous movement, etc.
My surgeon (same surgeon both surgeries) said the tumor was very sticky near the brain stem and cerebellum, and the facial nerve (already damaged from the first surgery) was stretched so very thin. If I could go back to 2021, I wish I had been more persistent with finding a source for neck pain and constant sore throats (they both disappeared immediately after the tumor was removed). And when the "wonky head" reappeared in the fall, getting an MRI more quickly. But my dad was in the end stage of metastatic melanoma, and his care took center stage. Surgery sooner than April of this year might have found a smaller tumor, less attached to other things, less damage to my facial nerve.
Learning to live with SSD has definitely been an adjustment. It took me a couple years to learn to advocate for myself (usually just in subtle ways, walking on one side of someone, putting my good ear to conversation, sitting at the end of table or row with the bad ear to nothing rather than a person). But, going into surgery the first time, I actually wondered if things would sound different, like tinny or a bad radio, but they do not. They sound the same. Not being able to sound locate is sometimes a challenge. Family and close friends have realized they can't just say "I'm over here." In your original post, you mention translab + cochlear implant. It is my understanding that translab approach sacrifices the hearing nerve, so even with an intact cochlear or cochlear implant, that would not restore hearing. I know all cases are different, but the hearing solutions I have learned about are all solutions that take sound from the bad side to the good side. The "pieces" of my ear all intact, but the auditory nerve is not.
Knowing what I know today, if I had to choose between SSD and facial paralysis, or give myself a better chance at one being good, I would absolutely choose to have a fully functioning facial nerve and be SSD. I miss the ability to smile. I hate the limits of taking care of my eye - constant lubricant (it is always dry) causes basically monovision, with decreased depth perception and peripheral vision, a goopy eye.
Message me if you want to talk sometime.
~ Kathleen
