‘There’s nothing like getting ready in the morning, wondering if your tumor is cancerous or giving you permanent nerve damage.’: Woman shares her struggles with nerve sheath tumor

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“As the doctor ran what felt like a cold probe of an ultrasound machine over my neck, he pointed to the monitor and said, ‘Right there…’

‘Yep, you have a tumor in your throat.’

MRI of tumor that is causing pain
Courtesy of Casey Klauck

Shocked, I sat in the chair stunned and asked him to repeat himself.

Deep down though, I already knew what I heard.

As the doctor repeated the words over again, I felt myself holding back tears. For some reason, I didn’t want him to see me cry. I wanted him to think I was tough. So, I sat there, dumbfounded, while he continued to speak.

To be honest, I’m not really sure what I initially expected him to say.

I had actually found this lump months prior, while getting ready in the morning, but my parents told me it was likely just a cyst. That was tempting to believe.

Still, I wanted to be sure.

So, I went to two different doctors. The first doctor quickly ran her hand over my throat and confirmed it was a cyst. You’d think I would have been relieved to have heard that, but it all went by so fast. Rather than feeling relieved, I felt unsettled. When I sheepishly tried to ask, ‘Are you sure?’ I was met with a telling look of, ‘You’re overreacting.’  The second doctor was much like the first. He too quickly told me my lump was just a cyst. Yet again, I didn’t feel confident from his care. Something just did not feel right.

I started to wonder if maybe I was just overreacting. I had always been prone to worry, so I thought, ‘Maybe this is all just in my head. Seeing the third doctor would be excessive, right?’ Not to mention, I wasn’t made of money. My doctor’s bills were starting to add up.

I let a little time pass and tried to put it behind me.

But, after a few months, I couldn’t shake how uneasy I felt. Every time I’d look in the mirror, there was my unwelcome guest staring back at me.

woman showing the lump on her neck
Courtesy of Casey Klauck

Feeling crazy, I decided to give one last specialist a try.

I didn’t even tell my parents that day I was going to the doctor. I knew they might say I was overreacting. I was in my twenties, I was active, I ate healthily.

But as the third doctor went over the type of tumor I was facing, along with the related problems I might experience because of it, I found myself in disbelief, clinging to his every word.

‘This tumor could cause your right eyelid to permanently droop and your pupil to dilate.’

‘You may not be able to lift your right arm above your shoulder or shrug your shoulders again.’

‘This could cause damage to your vocal cords.’

‘You may experience some numbness on the right side of your face.’

‘It doesn’t look like cancer, but we can’t be sure without surgery.’

As the doctor spoke, I felt overwhelmed. I tried to pay attention, but my mind was racing a mile a minute. I had to get out of there.

The second I walked out the door, the tears I had been holding back came pouring down my face.

I rushed down from the 20th floor of Chicago’s Northwestern Memorial Hospital to the very busy first floor. With tears flowing down my face, feeling a sea of people staring at me, I looked for any privacy I could find. In my desperate search, I noticed a single stall bathroom tucked away. There, I locked the door and sat on the floor, while I continued to sob, crying harder than I ever had before.

I called my parents, but because I was crying so hard, they could barely make out what I was saying. I then texted them with shaky fingers and told them I needed to be picked up.

MRI of tumor that is causing pain
Courtesy of Casey Klauck

The type of tumor I was diagnosed with is a nerve sheath tumor. Nerve sheath tumors are a rare type of tumor that grow slowly from nerve sheath cells, (the protective covering of the nerve). While they are often benign, their location and connection to nerves can be dangerous. If not caught, these tumors can eventually cause pressure on the spinal cord or nerve, leading to loss of function or pain. Surgery to remove these types of tumors can also be very difficult or inoperable, depending on their location in the body.

Given my tumor had not yet caused me any symptoms, other than a visible mass, my doctor thought it would be best to monitor it for the time being. I would need to track its potential growth through regular MRIs and let my doctors know if it started to visibly change.

Let me tell you, there’s nothing like getting ready in the morning and wondering if a) your tumor is changing, b) your tumor is giving you permanent nerve damage, or c) your tumor is cancerous.

Several years, and lots of expensive MRIs and doctor’s appointments later, my tumor did continue to grow by over 20%.  However, while MRIs could confirm my tumor was growing, they, unfortunately, could not confirm the exact nerve(s) my tumor was affecting. Still, doctors told me surgery would be inevitable. Due to my age, and the fact the tumor was growing, it was not a matter of if, but when.

They also warned me surgery could be hard on my nerves. Nerves are temperamental. Even if they are not damaged during surgery, they can still react from irritation. What’s more, nerves heal unpredictability. Sometimes it is impossible to say how long nerve damage can last.

Equipped with this information, I decided I would get surgery on December 29, 2021.

woman touching the lump on her throat irritated
Courtesy of Casey Klauck

I chose Mayo Clinic, not only for its great reputation but because Mayo’s neurosurgeon, Dr. Spinner, was the only specialist who agreed with me that now was the best time to remove it.

As my mom drove us to Mayo Clinic, I decided to quickly draft up a post about my upcoming surgery to share on social media. I felt nervous to share my story. I never really talked about my tumor much, and I didn’t want to be judged. I worried, ‘Would people think this was my fault, that I should have taken better care of myself?’ (The cause of nerve sheath tumors is unknown.) ‘Would people think I am being dramatic? After all, it’s probably not cancer.’

Ultimately though, I decided to share my story anyway. 2021 was the year I had been pushing myself to step out of my comfort zone. I had recently graduated from esthetics school, and I knew I would need to practice showing up online more, even if it was something I struggled with. My dream is to one day be my own business owner, and I knew that as a business owner, I could not be frozen by fear. Successful business owners act despite fear, and that was the mindset I was trying to cultivate.

I posted my reel and prepared myself for the next two days of my last doctor’s appointments, MRI, and surgery.

The night before my surgery, I decided to get one last workout in. I snapped a picture of myself raising my right arm. Dr. Spinner had told me there was a 50% chance I would not be able to raise it again above my shoulder post-surgery, and I wanted a picture of me doing so to inspire me for my recovery.

The morning of my surgery, I awoke with a sense of acceptance and calm. No matter what outcome I would come to find after my surgery, I would take it one step at a time. I was just grateful to have my mom and fiancé by my side as I went through this.

compression socks for surgery
Courtesy of Casey Klauck

Luckily for me, my surgery went better than expected!

Dr. Spinner, my amazing neurosurgeon at Mayo Clinic, was able to successfully remove my tumor with minimal damage. What’s more, my tumor was confirmed to be a benign schwannoma! (Schwannomas are a type of nerve sheath tumor.) I do have some slight nerve damage to the right side of my jaw, neck, and ear in the form of numbness, (much like the numbing sensation you get from Lidocaine at the dentist,) but I would take that feeling any day over a tumor!

Once the surgery was done, I began the process of healing. What came next shocked me.

About one week after I posted my reel, ‘My Tumor Story and What I Know So Far,’ my reel began to explode online. I remember texting my fiancé saying I couldn’t believe it had gotten 7,000 views. As of today, my reel has surpassed 4 million views! I still am in disbelief.

While I recovered from surgery, comments of prayers, love, and support flooded in. No one seemed to judge me as damaged goods. Instead, survivors of all kinds of devastating illnesses showed me humbling compassion and empathy, despite their own heartbreaking experiences. Others told me they now felt motivated to face their fears and get their own questionable bumps looked at. I even talked to one beautiful survivor of the same type of tumor as me on the phone.

She, unfortunately, received poor healthcare, which severely damaged her ability to speak and swallow. Amazingly though, she had been wanting to grow the courage to share her story with others but told her sister she needed a sign to confirm she should. That morning, her sister forwarded her my reel as a sign. I cannot tell you how much that meant to me. There is truly nothing as healing as kindness, compassion, and connection with others.

Now that my recovery time is drawing to a close, I have had a chance to reflect on my experience and think about the key lessons I have learned. I thought I would close my story by sharing these 5 key lessons with you, on the off chance they might help you one day.

unimpressed of a woman with a tumor
Courtesy of Casey Klauck

1. Stay on top of your regular physicals and become familiar with your body.

If you notice a lump or something that doesn’t feel right, don’t be afraid to get it checked out. There is peace in knowing what you’re facing, rather than avoiding the truth out of fear.

2. Don’t be ashamed to get multiple opinions, especially if you don’t get the best care from your doctor.

Doctors are humans too and everyone makes mistakes. When it comes to your health, the best advocate for you is you.

3. Seek out the best specialists you can.

If you’re lucky to have good health insurance, save yourself the time and stress upfront and seek out the best.

4. Choose someone you can rely on to help you digest important information.

While the classic advice is ‘never Google your illness,’ sometimes it’s not that simple. You still have to understand your options. See if you can ask a trusted and willing family member to help you narrow some research and focus on what’s important.

5. Your healthcare, your choice.

Illness has an unfortunate way of reminding you how little you’re in control of, but how you decided to handle it is ultimately your choice. Now there is something empowering about that.”

the stairs to go to the room to have tumor removal surgery
Courtesy of Casey Klauck

This story was submitted to Love What Matters by Casey Klauck from Chicago, Illinois. You can follow her journey on Facebook and Instagram. Submit your own story here,  and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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