Acoustic Neuroma | Brain Surgery Update: 2 Weeks Out

67
16027

Gratitude. I’m feeling a deep, overwhelming sense of gratitude for my family, my friends, my community—for you guys. For your words, your messages, your prayers…they helped me more than I’ll ever be able to express properly. Thank you barely scratches the surface. Despite the circumstances surrounding it, feeling that kind of outpouring of love is nothing short of life-changing. It will always be one of my most treasured gifts of this lifetime.  

I was deep into denial and distraction in the weeks prior to brain surgery. I threw myself head-first into work (thank you Nordstrom Sale!) and making the most of what summer I did have…mainly so I wouldn’t have to think too much about surgery and what would happen after. 

Preparing For Surgery: A Book & A Blanket Of Prayer

It was only a few days before surgery when I finally started reading the book I had purchased weeks before called Prepare for Surgery, Heal Faster. I had forgotten all about it. I basically read it aloud to my mom on our eight-hour drive to the hospital in Ann Arbor, just a few days before surgery. There were meditations you were supposed to do to calm yourself and even a CD that you could buy to help—but ain’t nobody got time for that when you’re a couple of days out, so I stuck with the suggestions I could actually do.

One of the suggestions was to ask a few loved ones to cover you in a “blanket of prayer” about 30 minutes before surgery. So I reached out to my family and asked them to please pray together the morning of the surgery…and they took my request and ran with it. They put together a prayer schedule where I would be covered in prayer the entire time I was in surgery…starting at 5am the day of. They gave me the schedule the night before my surgery and I was completely blown away. People I had never met signed up for time slots…people from all around the world. It was humbling, mind-boggling and incredibly comforting. 

Zack’s entire side of the family came down for the surgery. To say they were helpful is the understatement of the year. They said, “Scotti, we’ve got this. We’ve got Zack, we’ve got the kids…you just take care of you.” Get through surgery, start to heal. They had everything else. And as someone who is usually in control of all things, I had to learn to just lean on them. To let go.  

They walked Zack and I and the kids out to our car when we left their hotel the night before surgery. It was like my own little private army wishing me luck and sending me on my way with so much love. I couldn’t help but snap a pic.     

I’m officially two weeks out from surgery & I’m feeling a little better each day. My face is still paralyzed, but there’s more movement, little by little.

I went to bed that night with one kid tucked under each arm, the way we had for almost every night prior, breathing in their scents and trying to savor this moment as much as possible. I knew I was going to be sleeping alone after my surgery — the first time in years — and had no idea what it would feel like. I wanted to soak up all the snuggles and remember the feeling. 

Surgery Day

My alarm went off around 4am and I got up to shower. I was supposed to shower with antibacterial soap, wash my hair and not put any sort of lotion or cream or anything on after. (It’s amazing how fast it is to get ready without any of that.) Once I turned the water off, I heard Greenlea crying outside the bathroom door—I had thought the kids would just sleep right through me leaving, but when I opened the door, there stood G, just…sobbing. I scooped her up and held her and told her mom was going to be OK; everything was going to be fine. 

Ozzie woke up shortly after that (of course they’re both awake at 4:30am for the first time ever), so I grabbed them both for some last-minute snuggles before Zack and I left for the hospital. I gave them each one last hug and kiss, Auntie Amber came over to distract them, and then it was time to go. 

Everything kind of felt surreal at that point. It was dark outside and raining on the way to the hospital, and there was virtually no other traffic. Zack and I held hands the whole ride and I remember looking over at him and telling him that I was nervous.

“I know, Boo…it’ll be OK,” he said. 

Mom was waiting for us outside the hospital when we pulled up. Only one of them could be with me per day—with no switching in and out due to COVID—so mom had that first day while I was actually in surgery.  

Zack got my bags and opened the door for me and we hugged each other, and said our I love yous and it occurred to me that, in many ways, he had the harder job: having to be awake the entire day, while I, at least, got to sleep through it. Mom snapped photos of us and then he was back in the truck and it was time.

Mom and I walked into the hospital together, down the hall to the big red column where there were a ton of other people checking in for their surgical procedures. I was surprised by how many people were there, a palpable feeling of anxiety and anticipation in the air. 

We filled out the paperwork and then sat down to wait. When my name was called, we walked back into the pre-operative room where they had me change into a hospital gown and hair net…Greenlea had asked if I was going to be wearing underwear for the surgery, and I giggled to myself thinking she’d get a kick out of the fact that I wasn’t. There were a ton of patients back there, all separated by curtains…only one visitor each, waiting to meet all of the doctors and specialists and residents before their surgeries started.  

Mom was so cute and took pictures of practically everyone we met—from the nurses to the doctors to the anesthesiologists, and told me it makes me more human to them. I was hooked up to an IV, introduced to more people than I could possibly keep track of, asked about research studies I could be a part of, etc., and there was so much going on there really wasn’t time to sit and contemplate what was about to happen.  

Dr. Thompson (my neurosurgeon) and Dr. El-Kashlan (my ENT) both came by to greet me and to answer any lingering questions. I literally cannot say enough about the two of them…not once did I feel anything but complete confidence in their care. But I showed them pictures of my kids anyway and asked them to please take care of me. They said they would and I trusted them—I knew I was in good hands. 

Healing Statements

A few questions came into my mind while I was waiting for different people to come introduce themselves and I ended up asking Dr. El-Kashlan’s resident what it would be like waking up after surgery. She said I’d probably be super dizzy, like the sickest I’ve ever been. That made me nervous but I appreciated her honesty—and I was hoping that since my vestibular function had already been almost 100% lost that it wouldn’t be as bad as she said. (I couldn’t imagine what it would be like for other people with normal vestibular function to go into this surgery and come out on the other side.)

Having just read that book (Prepare for Surgery, Heal Faster), I had printed out a few “healing statements” that I wanted read during my surgery. The author of the book basically says that although we’re unconscious during surgery, our mind still hears everything and hearing affirming statements like, “the surgery is going well and is successful” helps our bodies start to heal and recover faster. I am a firm believer in the power of the mind, so if these statements had any chance of helping my recovery I was all in. I made sure the doctors and nurses knew I wanted them read and the anesthesiologists were ultimately the ones who were going to say them at the right times. And although none of the doctors or nurses had heard of healing statements before, not one person made me feel weird about it. Everyone was 100% on board with whatever made me comfortable.

After about an hour or so of meet-and-greets, IVs and paperwork, it was time to be wheeled into the operating room. I gave my mom one last hug. I don’t know if she was scared, but I never saw anything waver in her face at all — just smiles and ‘I love yous’ – and her confidence that everything would be OK gave me comfort as well. The last thing I remember was a big room with a giant light overhead, and lots and lots of people surrounding me. I remember someone saying something like “OK, we’re all here for Scotti Oja, acoustic neuroma, blah blah….”

And I was out.

A Successful Surgery

General anesthesia is like time travel, Shana had said to me, and I couldn’t believe how quickly the time had passed when I woke up. My first conscious thoughts were of dreaming (about the Nordstrom Sale!) and then I realized my name was being spoken. “It’s over already?” were the first words out of my mouth. I felt great. I remember them asking me if I felt any pain and I was like, “Nope! None!” I was ready to walk straight out of the hospital…let’s go! It’s over! I was in the recovery area where everyone again was separated by little curtains and waking up from all of the different procedures. They allowed my mom back to visit and I remember just joking and laughing—drugs are crazy.

The surgery had been a big success—Dr. Thomson had talked to my mom and sister (via phone) and was very pleased with the outcome. The surgery had lasted longer than anticipated, but they were able to remove almost all of the tumor and had managed to save my hearing and facial nerve function. Dr. Thomsen was confident that I would regain all movement since they were able to confirm that the facial nerve still worked at the end of surgery, but because they had to scrape so much to get the tumor out, the facial nerve itself was “angry” and would take time to come back. I was dimly aware that I couldn’t smile or move the right side of my face, but I was so happy to hear it was temporary and relieved that the surgery was over. At this point, everything was being processed through the euphoria of pain meds, but…the pain was coming. 

Post-Surgery Pain

I had expected to be somewhat out of it post-surgery. At least for the few days I’d be in the hospital. You know — just sleeping, mostly, and unaware of the pain, coasting through. But neurosurgery is a bit different, and they want you to be alert…like doing a neuro test every hour (round the clock) to make sure you’re OK. “What’s your name, where are you, why are you here, hold your hands up, push/pull, etc.”

That first night was the worst. “I’m Scotti Oja, I’m in Ann Arbor, acoustic neuroma removal…” over and over again.

I was on a ton of different medications (including steroids) that made me feel crazy. My thoughts felt like a carnival, jarring and intense. As much as I wanted to sleep, I couldn’t. The pain was excruciating, and I was just so overwhelmed. I had three IVs (one on each arm, one in my foot) and was getting a shot in the muscle of my arms every three to four hours to keep nausea at bay. It hurt, but I’d choose the shots over nausea any day. 

I wanted my mom or my husband there and neither one could be outside of visiting hours, and I finally broke down to the nurses (who were Godsends, btw).  

One of them held my hand while I cried and told her I hadn’t been able to break down before the surgery because I wanted to be strong for my kids, not scare them, but I was in so much pain now and feeling all of the feelings. She told me it was OK, that I had just been through a major trauma and I could let it all out, that I was safe. Her compassion was like a lifeline at that point. She gave me a melatonin to help me sleep, and by the next morning we had found a medication schedule that helped with the worst of the pain.

I was anxious to see Zack the day after surgery, and I remember the relief I saw on his face when he walked into my room. I remember being nervous that my face was messed up, but he literally could not care less about it, he was just so happy to have me “back.” He was happy the tumor was gone, that I had made it through the surgery. Everything else was details. 

Dark Thoughts & Small Wins

As the reality that I couldn’t move my face set in for me, though, things felt kind of dark. I couldn’t chew, talk, smile or even close my eye (making my already sleepless nights even harder). I hadn’t anticipated that outcome. I mean, I knew facial nerve issues were a possibility but…at 30% (or less) risk outcome, I kind of just assumed that it wouldn’t happen to me. I mean, I had been very clear: Hey Doctors, if there’s a question of my hearing or my face…take the hearing! And they had saved my hearing so…

It’s easy to sound vain when talking about this, I know. But it’s not just a matter of appearance. It felt like I had been put into a different body. I looked nothing like myself in the mirror. My smile looked like a weird grimace—my smile! Smiling is so much a part of who I am, so fundamental to my being. Communicating, even…slurred or garbled speech that didn’t sound like myself, not being able to eat without drooling or chewing on my own lip. Having to wear a moisture chamber that looks like an eye patch since I can’t shut my eye. None of this had been in my realm of possibilities prior to surgery, and now I was second-guessing my decision to even have surgery in the first place. How long could I have lived with the tumor? Did I do the right thing?

There were some dark times in those first days of recovery. I felt like I had gone into the hospital one person and left a completely different one. My entire perspective completely shifted overnight. Instead of huge dreams and life goals, I desperately wanted the simple things back. I just wanted to be able to smile and enjoy a glass of wine. To go for a walk with my husband, snuggle with my kids, taste food and drink (everything kind of tastes weird so far), to shower and wash my hair!

It’s crazy how important these little desires become when they’re threatened. The super simple things I had taken for granted.

We were able to leave the hospital on Saturday—with a huge bag of pills and medications and pages upon pages of directions on how to take them. The ride home felt a little weird because of dizziness, but it wasn’t too bad. And when we pulled up to our Airbnb, there was little Greenlea—her face lighting up when she saw me in the truck.

“Mom!” she yelled, running over to me the second I opened my door. “MOM!!” She collapsed into my arms, sobbing. 

My heart broke for my sweet G — I can’t imagine how hard those days (and nights) were for her. To go so long without seeing me, without knowing how things were going in surgery, without sleeping with me for the first time. What a brave little girl. I’m so thankful for my family being here for her and Ozzie and Zack. So, SO thankful.

Coming “home” was more emotional than I had expected it to be. We were all sobbing, holding one another, thankful it was over, but still just full of grief at everything that had happened. 

At that point, I still felt like nothing was ever going to be the same again. And although this facial paralysis is “temporary” (I am 96% likely to make a full recovery), there is no 100% guarantee that my face will go back to the way it was before surgery. So of course I spent a few days focusing on the 4%, instead of on the excitement Dr. Thomsen had shown right after surgery.

When you’re deep in it, it’s hard to see your way out.

I’m officially two weeks out from surgery & I’m feeling a little better each day. My face is still paralyzed, but there’s more movement, little by little.
Zack’s family had created a healing oasis for me in my room—with decorations and signs and positive messages all around.   

Mom and I got into a routine of pills and vestibular exercises (to help re-train the brain), walking and napping. She did everything — I basically reverted to being a child, unable to take care of myself, and Mom made sure I had everything I needed. 

Zack and his family had the kids, Mom had me. I gave up all control and just let myself be taken care of. I was walking around the block daily (sometimes multiple times a day) just trying to regain my balance and keep moving. I tried to listen to my body and rest when I needed to rest instead of powering through like I usually would. I kept thinking about the six-week mark— it’s a big deal in brain surgery recovery — but man…six weeks is going to take forever.  

We were all excited when it was time to take my bandage off. The bandage was tight and irritating and felt so good to cut off…. know when you’re wearing your hair too tight for too long? It felt like that. And although the scar is pretty intense right now, they were able to get away with only shaving a small amount of my hair for the surgery. Small wins, right? (Update: The staples came out at my appointment yesterday and it feels good to have them out.)  

Finally — A Bit Of Home

Shana was able to come visit the week after surgery — Greenlea’s birthday, to be exact. Zack’s sisters had wrapped presents before they left and Shana took charge of the “party,” decorating the house and helping Greenlea to feel special during an otherwise pretty crummy birthday. I was super-tired but was able to rest and leave everything to my family. Shana cooked a ton of food (that we ate for days after she left), gave me hugs, let me cry, took the kids, watched shows with me and even meditated with me in the 48 hours she was here. It was like having a piece of home here in Ann Arbor.

Speaking of home, I’m so looking forward to going home. My post-op visit was Thursday, and I got the all-clear to head home before having to come back for my one month post-op visit next month. I’m officially two weeks out from surgery, and I’m feeling a little better each day. My face is still paralyzed, but there’s more movement, little by little. The doctors are now estimating that my face should be back to normal within a three-month window, and that the rest of me will be feeling much better by that six-week mark. Fingers crossed. I’m leaning on my friends and family right now, and am so, so, SO beyond thankful.  

Of course, I’d love to have some profound lesson I’ve learned from this experience to share with you guys, but I don’t. Not yet. I’m still in it, still learning and seeing all the little pieces come together. And although it’s not profound and has been said a million different ways before, I am just appreciating the little things. Like smiling. Once I get mine back, I can promise that I’ll never take that one for granted again.   

Thank you, one more time, for all of your support. Your love carried (and continues to carry) me through the dark times…reading your comments over and over has given me strength when I really needed it. 

I’m forever grateful.

XOXO,

Scotti