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.)

57 COMMENTS

  1. Scotti, I am an Otolaryngologist and figured you had an AN back when you first mentioned the facial paralysis and tumor. Sounds like you have had a complete work up a good team approach with the surgeons and I am sure you are in good hands. Sending you strength and prayers.

  2. Sending prayers and extra strength your way. Thank you for sharing an update. You are surrounded by so much love and support that will help you get through this.

  3. Sending lots of love and prayers! My mom had this surgery when I was a child, it was scary. Happy to report she fully recovered and lives a normal life and I will pray that for you and your family!

  4. Scotti, you are just the coolest in every way. So brave, so thoughtful, so faithful. I know you will keep us posted and I will pray for your healing and peace. I have a family member who suffered from debilitating headaches, vertigo and more. He eventually had brain surgery–over 15 years ago. He got a whole new happy life filled with smiles, laughter, fun and normalcy. Sending hugs.xo

  5. You have been, and will continue to be, in my thoughts. I’m glad you have your mom and your sister, and the rest of your family to help you through this scary time. I’ve always been team “let’s get the scary part over and get to the recovery part fast.” I hope that works out well for you! Sending thoughts and love!

  6. Holding you in good, strong thoughts, Scotti. Here’s to a smooth surgery and quick recovery so you can get back to all the things you love.

  7. Keeping you in my thoughts – I’m so sorry you’ve been given a brain tumor to deal with on top of a pandemic! Like a lot of the commenters (here and from your earlier post), I know people who have had similar surgeries with really great outcomes. Please know that a lot of people are thinking about you and wishing you luck and health and an early spring with well-drained roads and no slush and gorgeous blue skies to keep you company.

  8. I am praying for you. We are so fortunate to live in the country with amazing doctors and technology. My mom had surgery for a brain tumor 3 years ago and is doing great. My 18 year old son had the lower right half of his jaw removed and replaced with a jaw made out of his fibula this summer. Other than the scars in his neck and leg, you would never know his fibula is now his jaw!!!! God is good and the technoloy we have is second to none. Getting my son’s diagnosis and watching him go through the process was the hardest thing I’ve had to do in life but I look back at the experience with nothing but gratitude. We had such an outpouring of love from friends and family and I had a sense of peace knowing God had a plan for my son. I love that you are seeing the beauty of your situation admist the fear and unknown. Keep placing your faith in Christ and he wll make your paths straight!

  9. You got this Scotti!!! You come from a line of strong women and we all have your back. I have been thru a nerve conduction study…I’m sorry you had to have one…they are awful. I have serious vertigo and those tests to diagnose are a nightmare…but you got thru it all…just like you will get thru the rest of the steps. So glad you have such great support and that you are talking about it. Sending you love and strength for the journey from 🇨🇦

  10. Thank you for sharing. I’m sorry about the waiting and the anticipation- gives our mind too much freedom to wander. Know that you are in good, well trained hands. Positive thoughts for you and your family.

  11. Thank you for sharing your story, Scotti – sending you best wishes for a speedy and full recovery. Strength, beauty, love and grace! You’ve got this!!!

  12. Scotti- Excellent post! Such a well written and unsensationalized description of a myriad of tests that literally would have made anyone’s head spin! And as a physician I feel that anyone reading this would be more comfortable about their next medical experience, so thank you for that! I have had a few female patients about your age w AN and they have done very well. You will be in great hands. Lifting you up over these next few months!!

  13. Scotti, so sorry to hear about this. Can I recommend the book All Over the Place, which is one of the most delightful things I have ever read (it’s mostly a travel book) by Geraldine DeRuiter (you might know her brilliant blog, The Everywhereist) who has (spoilers) been through and written about, in that book, this very thing?

  14. Prayers for a successful surgery and smooth recovery. I read this quote yesterday; perhaps it will be comforting to you as it was to me.

    “Do not look ahead to what may happen tomorrow. The same everlasting Father who cares for you today will take care of you tomorrow and every day. Either He will shield you from suffering or He will give you His unwavering strength that you may bear it. Be at peace, then, and set aside all anxious thoughts and worries.” -St. Francis de Sales

  15. Scotti, I know you don’t know me, but this post made me cry. And believe it or not, it isn’t because of *what* you’re going through, but rather how you’re handling it. Your heart shines through, and your love for your family (and theirs for you) is what makes the world good.

    Thank you for reminding me how lucky I am.

    I have all the faith your surgery will go well and you will continue to inspire (along with your mom and sister).

    <3 <3 <3

  16. Scotti, thank you for sharing your experience with all of us. I admire your openness and the way you are approaching this epic moment in your life – it takes a lot of courage. I am thinking of you and your family and sending so much positive energy your way!

  17. Thank you for sharing your story and update, Scotti. All the love and strength headed your way. I am glad you are feeling supported and have a great medical team behind you. <3 you got this.

  18. I had a super scary surgery a dozen years ago (tumor on my pancreas, non-cancerous but growing). It was such a hard time—choosing to do this surgery even without immediate need, knowing that it would be a major surgery (and I also had a young kid at this time, just 3 years old). Sending peace and healing thoughts your way! You are surrounded by an awesome family and community, it sounds like. That makes all the difference.

  19. Thank you so much for sharing your story. I was diagosed with multiple inoperable schwannomas on my spine about 6 years ago. I can take Neuronitn for the pain and am fortunately able to live pretty normally. I am happy you can have surgery and have faith it is going to go perfectly well!!!!!

  20. You are a very brave woman! No one ever wants to hear they have a tumor (even a benign one) especially one in their head. One of my GFs had left temporal craniotomy to remove a meningioma in 2011. She recovered well from the surgery and has had no reoccurrences. I am not sure if it is exactly the same as yours and I know it probably doesn’t help much but just thought I would put it out there. I am sure you will do great and it sounds as if you have a great medical team and lots of fabulous friend and family support! I am wishing you a speedy and easy recover.

  21. I don’t post that often but Scotti, I love your badass style tips, your advocacy for racial justice, and your hilarious banter with your sister… I am sending all the good vibes and hope your surgery and recovery go well. <3 <3 <3

  22. Get well soon, Scotti! You are in great hands at Michigan Medicine–I am lucky to live in A2 and have had wonderful experiences with UofM Health. You’ve got this!

  23. Ditto Kate! Scotti, if you need anything in A2, let your community know. (Although maybe the website isn’t the best place, granted. I’ll post on the Insiders page).

  24. Scotti, you are blessed to have such an amazing family and community to lean on, and you are such a strong, resilient and amazing woman. Thank you for your courage and vulnerability in sharing your journey. Your positive attitude is an inspiration to so many of us, and I know you will get through this. Sending prayers for strength and peace and a complete and speedy recovery! 🙂

  25. Thank you so much for the update. It definitely sounds like you are in good hands both medically and at home. That makes a huge difference! I’m a longtime reader, (a very irregular poster,) and two-time cancer survivor. For me, my most anxious times were after diagnosis but before surgery. I tell you this so you know that it gets better!

  26. Scotty, so much love and prayers and good vibes going out to you. I’m a long-time reader, and I’ve been wondering how everything has been going. I want to thank you for sharing this update. Wishing you a speedy recovery ❤️

  27. My husband (42 at the time) had this surgery in June 2019 and it was very successful. They were able to save his hearing and he made a complete recovery. He is grateful every day that he is able to hike, surf, snowboard, and do all the things he enjoyed since having his vestibular nerve removed. He hadn’t lost any hearing prior to the surgery and so they did everything possible to preserve that nerve as well as his facial nerve. It was a very stressful time for our family but we are grateful it was found early enough and it was extremely successful.

  28. Praying like mad and sending positive thoughts of healing, strength, and peace for you, your family and friends, and your medical team.

  29. God does have you in his hands, and I’ll praying not only you and your family, but for your entire medical team to get you back to your amazing self – hearing and facial nerves fully intact!

  30. I don’t have the tumor, but have Ménière’s disease, which affects those same nerves. Over 20 years I have very slowly lost hearing in one ear and periods of vertigo that come and go but no facial paralysis. My biggest advice is to religiously do the exercises they give you. It makes a huge difference.

  31. I absolutely hate that you’re having to go through this. But watching you and Shana go through such majorly traumatic experiences with such hope and humor and grace is just amazing. Your parents must have been really excellent to have raised two such amazing women.

  32. Lifting you up in my thoughts as you prepare for this journey. I’m so sorry that you have to go through this, but I’m glad you have good medical care available. For what it’s worth, I have a 60-70% hearing loss in my right ear as a result of a benign tumor in my middle ear when I was young. I just sleep on one side if I want to tune everything out, lol, and other than that I don’t think about it. Good luck. You got this!

  33. You’ve come to the right place! Rest easy knowing you will be receiving great care! Sending good vibes and wishing a speedy recovery!

  34. Pulling for you all the way. The way you wrote this–your beautiful spirit and self came through SO clearly, from your sass to your love for others to your transparency to your humor to your humility. You’re a blockbuster of a human being, girl. Peace, hope and courage on your journey–you both have and will receive everything you need for it. xoxo

  35. Sending you light and prayers. You got this. I am a mental health therapist and really appreciate how well written and honest your posts are- feel the feelings and your strong family and spirit will help get you through this.

  36. What a courageous post! I admire your ability to face this with humor and levity! You are incredibly strong and you’ve got this! Sending healing energy your way!

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