My Journey at Mayo Clinic: Finding Hope Amid the Challenges

Mayo Clinic is, hands down, one of the most impressive buildings I’ve ever stepped into. Honestly, if it weren’t for the endless tests, eye dilation, and the weight of neurological exams, I’d almost consider vacationing there. Almost. Luckily—or unluckily, depending on how you look at it—I’ll be back next week to experience its awesomeness again.

This visit was a whirlwind of emotions. While I didn’t walk away with all the answers I hoped for, I left feeling like I was finally in the right place—surrounded by experts who truly understand the complexity of my condition.

The Current State of Things

Let me bring you up to speed. As part of this ongoing journey, my brain tumor—thankfully non-cancerous—has been under watchful eyes since my diagnosis. During this visit, the doctors ordered another MRI to track any changes. If the tumor stays the same, it gets to stay put, with periodic scans to ensure it’s not growing. That’s the good news.

The not-so-good news? My optic nerves remain “significantly swollen.” This swelling is caused by increased pressure in my brain, which has led to fluid buildup around the nerves. On a scale of 1 to 5—where 5 is permanent vision loss—my optic nerves are holding steady at a 4. This is exactly where I was in June, and despite the medication, there’s been no improvement. While I’m grateful my vision hasn’t worsened, I can’t help but feel frustrated that we’re running out of time and options.

The Next Steps

The doctors believe my current medication isn’t cutting it, which feels like a setback. But there’s a small chance one more medication might help. I’ll be seeing an endocrinologist next week to explore this option. If it’s worth a shot, they’ll give it four weeks to show any improvement. If not, it’s time to move to the next option: a stent.

Here’s where Mayo Clinic shines. The doctors here have extensive experience with stenting—something my local doctors haven’t been able to offer. While stents and weight loss can help preserve my vision and hearing, there’s no cure for this condition. It’s a lifelong battle, which is daunting, to say the least. But knowing I’m in capable hands at Mayo makes all the difference.

A Silver Lining

Despite the challenges, there are a few victories I’m holding onto. First, the doctors are firmly against putting in a shunt, citing its high failure rate. This felt like a win, as I’ve been dreading that option. Second, I was told I don’t need another spinal tap—and honestly, that news alone made my entire week.

I also have to say how much I appreciated the doctors I met at Mayo. They listened, understood, and gave me a sense of confidence that I haven’t always felt in this journey. I’m thankful to have access to their expertise, and while the road ahead isn’t easy, I’m feeling hopeful.

Gratitude Amid the Struggle

This journey has been anything but simple, and some days are harder than others. But I’m constantly reminded of the support I have—your thoughts, prayers, and well wishes mean the world to me. I’m blessed to have this opportunity to work with Mayo Clinic, and I’m holding onto hope that we’re getting closer to a plan that works.

Thank you for walking alongside me on this messy, unpredictable path. Life is hard, but I’m learning every day that even in the hardest moments, there’s room for gratitude, hope, and faith.