Apr 15, 2022 Latest post:
Jul 28, 2022
Kate has it all. Brains, beauty, great kids and now, a brain tumor. The full package. #LuckyLady
After making it through 2020 and then 2021, I figured 2022 could only get better. I definitely didn't have brain tumor on my 2022 bingo card... But here we are!
In summer/early fall 2021, I noticed my left ear was plugged up... like when you are on an airplane or have a cold. At first, it came and went - driving me a little crazy as I was constantly trying to pop my ears. But I was busy with parenting and work, so it took me a while to get in to the doctor. I finally went to my PCP in November, who eventually referred me to an ENT after trialing me on Flonase to see if it may be allergies.
In January 2022, I had an audiology test and exam and was diagnosed with sudden and permanent hearing loss in my left ear- With about 50% of my hearing gone in my left ear. My right ear is fine. They told me that this sometimes just happens - could have been from a virus , could be for no reason at all, and very small chance it could be from a tumor . They always do MRIs just to check - and the MRI would help them see if there may be anything in the back sinuses (which is what I was convinced was the issue; I was sure the hearing was curable!).
On January 18, my MRI revealed a 1.5cm x .6 tumor consistent with an acoustic neuroma , aka vestibular Schwannoma. I googled it and saw brian tumor... and LOLed for first 24 hours until the shock wore off.
So what is it? An acoustic neuroma is a rare BENIGN tumor generally on the 8th cranial nerve leading from the brain stem to the inner ear- it's on the nerve that controls hearing and equilibrium, very close to the 7th cranial nerve that controls facial movement. It isn't cancerous and doesn't spread. It is usually, but not always, slow growing. It is caused by an overgrowth of Schwann cells on the sheath of the nerve - no one knows why this happens. About 2,500 to 3,000 cases are diagnosed per year (1 to 3.5 every -100,000 people) constituting about 6-10% of all brain tumors diagnosed annually. 95% of these are unilateral (on one side) and non-genetic , including mine.
The tumor is within the ear and inner auditory canal which is a space between the ear and the brain stem-- it is not within the cerebrum so cognitive function, memory, etc. shouldn't be affected by the tumor itself. But As it grows, it can compress the brain stem, which can be real bad and eventually life-threatening. Most are discovered before that happens- including mine! My tumor is next to, but not at all compressing, the brain stem as of the January MRI. But my little bugger has a cyst at the end of it extending into the inner auditory canal, which dictates which type of surgical approach needs to be used and makes sudden swelling potentially more likely if it is not removed. Because of the location and cyst, the type of surgical approach that has been recommended will take out what's left of my hearing on the left side .
After considering all the Pros and cons with my medical options and consulting with 3 top clinics across the US (and going thru lots of anxiety for a few months!) - as well as thinking about my daughter Abigail's schedule with graduation and going to college this fall (American University in DC!) - I decided to have surgery at Mayo on April 20.
The surgery is expected to last 6-8 hours and will be performed by a team led by a neurosurgeon and neurotologist, a speciality I never knew existed - it's a ENT surgeon who sub-specializes in complex problems of the inner ear, auditory nerve and skull base. It will be done via a Craniotomy behind my ear - using an approach called “translab”. Assuming all goes well, I will be in the ICU for 1 night and in the hospital for just 3-4 days total. While I'll lose all hearing on my left side as a result of the surgery, I'm holding out hope that the tinnitus(ear ringing) I've been experiencing will improve post-surgery, though there is a small chance it could get worse. I will likely have balance issues post-surgery, which will most likely resolve within weeks to months . Partial facial paralysis (including the inability to shut one's eye) is also a risk of surgery - but it's usually just temporary, resolving within weeks to months. They tell me the best post- surgical therapy is walking to retrain the brain to send signals to the right side so looking forward to getting through this surgery with flying colors and spending my spring and summer walking, though I expect to have significant fatigue post-surgery as the brain heals and re-routes signals. My doctors tell me to expect to be off work full-time for 12 weeks, assuming surgery goes well. And It will likely take longer to adjust to my "new normal" of single-sided deafness and potential equilibrium Issues so I expect to return to work gradually after that.
For more info on acoustic neuromas - Google the Acoustic Neuroma Association, which has been an invaluable resource for me. www.anausa.org
I have an amazing small team of friends & family who are helping get me organized and ready, and they'll update this page when I can't. They're organizing ways to help, too, which I know so many of you have asked about. Info will be posted here in the coming days.
Finally- Google Mark Ruffalo or Kelly Stafford (wife of LA Rams QB)... both had this same brain tumor!