Brain Tumor Update: A Family Road Trip

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So you guys might remember this whole facial paralysis/brain tumor thing I have. We recently took a trip down to Ann Arbor, Michigan, to meet with doctors and specialists at Michigan Medicine to figure out what the next steps will be. Our kids were just super excited to stay in a hotel and swim, and my sister-in-law (and her son) quarantined for two weeks before we left so she could help with the kids. And thank God she did because Zack couldn’t actually come in with me to the doctor appointments due to COVID protocols—he had to drop me off for each appointment and pick me up after. 

It didn’t seem like that big of a big deal in the beginning because I was only scheduled for two appointments: one with the ENT and one with the neurosurgeon. But after meeting with the ENT specialist, two turned into… a ton multiple. And because I had traveled so far (about an 8-hour drive with three adults and three kids jammed into the truck–FUN), they were able to cram them all in so we only had to stay one more night than originally planned. 

I mean, the fact that they were able to schedule all of the tests over so few days was amazing, but because of that, everything was a bit out of order. For example, one of the first appointments I had was with a PT who started going through the exercises I would be doing post-op; I interrupted and was like, “Wait. Is surgery, like…a forgone conclusion at this point?” Most patients probably already know that when they meet with her so she said, “I mean, if that’s….what…you choose to do…” and then referred to “surgery” with air quotes from then on. 😂

I remember calling Shana and being like “I think….I might be having…brain surgery?” The fact that I had an appointment with a neurosurgeon should have clued me in, but I think a part of me thought I was going to go down there and they were going to be like “you’re fine! Go home, thanks for coming…” 

To recap real quick, I have a brain tumor called an acoustic neuroma (aka vestibular schwannoma). It’s in my inner ear canal on the right-hand side and can affect hearing, balance and facial nerve function. Although it’s benign and slow-growing, it needs to come out before it grows large enough to press against nearby brain structures (such as the brainstem and the cerebellum) and becomes life-threatening. And although I knew that, it didn’t really register until I was in an appointment discussing post-op physical therapy.

So the reason for all the extra tests was that the ENT (the first doctor I met with), was concerned that the tumor might be on the facial nerve rather than the vestibular nerve – given the way the tumor had first presented itself (remember my facial paralysis?). If that was the case, they wouldn’t be able to remove it without leaving half of my face paralyzed. AND…ultimately they wouldn’t know for sure until they operated. 

Great. 

Statistically speaking, it is much more likely to be on my vestibular nerve (the balance nerve), but when you’re talking facial paralysis, statistics aren’t really all that comforting, you know? 

In order to gather as much information as possible about where the tumor was, I went from having two appointments to having a hearing test, a balance test, vestibular testing, facial nerve testing, auditory nerve testing and another CT and MRI ordered. It was overwhelming and sounded exhausting, but I was all about getting answers—I mean, that facial paralysis happened months ago now, and there’s been a level of anxiety about what caused it that I’ve been dealing with ever since.

The hearing tests came back normal (which my husband objects to on a daily basis—“There’s NO WAY you have normal hearing…you literally don’t hear half the things I say!” Maybe it’s just selective hearing? 😂), but the vestibular testing showed that I have zero functioning on my right side. 

Zero

And the testing for that was crazy: Picture me, lying down while wearing blackout goggles (that recorded my eye movements) while they shot hot water and then cold water into my ears, one side at a time. I had no reaction when they did the right side, but when they did the left, it felt like I was on a ride I couldn’t get off; I was SO dizzy and disoriented. 

Apparently that’s the healthy response, though, so the fact that nothing happened on my right side indicated that the vestibular nerve was completely damaged. The crazy thing about that is your body can actually make up for that damage using your other inner ear, vision and muscles and joints. Which means that my body has been compensating for that damage for months now (at least since I experienced some intense vertigo last summer) and explains why my balance is always slightly off. (It’s not the wine…ok, sometimes it’s the wine.) All of this was ultimately a good thing because it meant that the tumor was MORE LIKELY to be on my vestibular nerve rather than my facial nerve. (I can handle being a little off-balance if it means I can move my face.)

Since vestibular nerve function is responsible for balance, they tested that as well. One test involved me standing on an uneven surface, arms crossed in front of me with my eyes closed. I could not, for the life of me, not fall over. Another one had me marching in place with my arms out in front of me, eyes closed. When I opened my eyes, I was shocked to see that I had completely turned 90 degrees to the left when I thought I was facing front the whole time. (And I have to say it was kind of fun to put my family up to these tests and then see their reaction to mine.)

After the hearing and vestibular tests came the facial nerve testing. And that was even crazier than the blindfolded water torture test. First they put electrodes on my face to in order to send an electric current through that would contract the muscles one side at a time, measuring any difference. There was a definite difference between the left and right side, so they did another test—this one involved sticking a needle that was attached to a wire into different parts of my face to measure how well my muscles reacted when I shut my eyes, scrunched up my nose, smiled, etc., (I’ve had needles in my face before, but at least with Botox you’ll have less wrinkles later. 😂) The results pretty much confirmed that the right side has been affected by the tumor, but we’re hoping it’s because the tumor is close to the facial nerve rather than actually on it.

There were more tests with electrodes and earplugs and loud clicks and all the things, and I have to say, despite feeling somewhat like a lab rat, all of the doctors there were very reassuring throughout all of it and answered every question I had. I felt very comfortable with everyone I met. The last tests I had before leaving were my MRI & CT scans—the CT was a breeze, but the MRI was…not. I’m claustrophobic, and lying in a small tube with a helmet on my head, not moving for 45 minutes is not my idea of fun.  I almost had a full-on panic attack while I was in there, but was able to breathe through it— Xanax helped. 😬

So all of these tests along with the MRI and the CT ultimately showed the doctors that the tumor is most likely on my vestibular nerve. Although they won’t know for certain until they actually operate, all of the tests pointed to the vestibular nerve being the more likely scenario. And since the tumor has not yet affected my hearing, the doctors recommend surgery ASAP if I want to preserve it. The MRI showed that the tumor is “very impacted” in my inner ear canal, which will make it more difficult for them to save my hearing, but both the neurosurgeon and ENT are fairly confident they can do that and preserve facial nerve functioning as well. (My hands get sweaty every time I think about that.)

All of this to say I’ll be having brain surgery soon. Which is still so freaking surreal. I mean, who has brain surgery?? (Apparently I do.) I’m waiting to hear back as far as the actual date goes, but they’re currently booking a couple of months out. I’m nervous, of course, but part of me just kind of wants to get it over with. There’s been so much waiting and anticipation, and the amount of anxiety that comes along with that is exhausting. I want to be through the scary part and onto the recovery. But I also don’t want to have brain surgery…so there’s that. One day I’ll feel really strong and ready to go—bring it on, tumor!—and the next I’ll be like, wait, how much do I actually need the hearing on my right side? 

Of course, I know surgery is the right choice, but it’s hard to ever think of brain surgery as the right choice. Fortunately for me, both Shana and Mom have experience with scary surgeries (wait, did I just call Shana & Mom’s breast cancer fortunate?) and they’ve both been so incredibly…helpful — that’s the understatement of the year.  

And I guess there really isn’t a word that properly conveys my gratitude—to them, to the rest of my family and friends (*who sent me on my way downstate with a ton of cards and letters and LOVE), and to YOU GUYS, who wrote such reassuring messages of support and encouragement after I first shared my diagnosis…I am so thankful and humbled.  

It’s a weird thing to feel lucky as a result of a brain tumor diagnosis, but…I’m telling you, to feel this kind of love is such a special gift. From the bottom of my heart, I thank each and every one of you for commenting, for praying, for sending love and even for just reading these posts. I’m so grateful. 

Of course, I plan to keep you all updated on this journey as I go along. I plan on working as much as I can between now and surgery because it brings me joy…and I hope to share a little of that with you guys, too. So for now I’m just going to trust that God’s got me and keep reminding myself to keep my faith stronger than my fear. He makes all things work together for our good, even when we can’t see it…but I hope that someday I will. 🙏🏼❤️

All of this to say I’ll be having brain surgery soon. Which is still so freaking surreal. I mean, who has brain surgery?? (Apparently I do.)

And at least the kids could swim!! 😂

XOXO,

Scotti

*I keep this bulletin board in my room to remind myself how lucky I am….brain tumor and all.

All of this to say I’ll be having brain surgery soon. Which is still so freaking surreal. I mean, who has brain surgery?? (Apparently I do.)