Category Archives: Personal

A Tumor On My Neck! | Neurofibroma Health Update


Unexpected Health Update, but before we start, I just wanted to mention that a kind friend set up a GoFundMe for our family. We’ve been homeless for almost three months now and costs are really adding up. You don’t have to donate, and please don’t feel guilty if you can’t, but if you wouldn’t mind sharing the link it would mean a lot to me. Thanks.

Anyway, back to the topic at hand.

This month I’ve been feeling worse than I normally do. I’ve actually been trending downward steadily since we first became homeless in October, but I’ve dismissed a lot of that on the things I don’t really have the luxury of at the moment like a reliable diet, good sleep, low stress, etc.

However, my back and neck have been causing me a lot of pain this month in particular. I’ve been a little wary of that, because during the summer I noticed a growth on the back of my neck. I thought it was a pimple at first, but when it didn’t go away I came to the conclusion it was probably a neurofibroma.

I feel like I’ve mentioned neurofibromas in other videos, but to summarize: my genetic condition, nuerofibromitosis, causes chronic migraines and tumor growth. These tumors grow on nerves, hence the neuro part of the name, and they are called neurofibromas.

They’re typically not cancerous, but they can grow on places that could endanger other parts of the body, like the spine, and because they grow directly on a nerve itself, they can be difficult to remove.

I didn’t really do anything then for several reasons. It was the middle of the summer and I was still in college. I had just gotten back from Leviosa and was trying to edit videos and foster the connections I had made there. And finally, we were still trying to find a new place before we lost our home, so I had lots of other things on my mind.

I was able to meet with my neurologist in September and I told her about it then, but she decided that we’d just keep an eye on it and see what happens. We weren’t positive it was was a neurofibroma. It wasn’t causing any symptoms at that point.

The past few weeks I’ve been feeling increasingly terrible though. My neck and back have been hurting a lot. And then the other day my shoulder started vibrating, just shaking for no reason. I wasn’t even doing anything. I was just laying down!

The next day I woke up and could barely lift my head because my neck hurt so much. I thought, “You know, probably a good time to go to the doctor about this.” The only reason I hadn’t already set up an appointment was because I had one scheduled for the 28th. I set it up back in September after my last appointment, three months ahead. But when I called to see if they could maybe move that up earlier, they said I didn’t have anything scheduled and couldn’t fit me in until 2017.

I would have called in mid-November had I known my appointment this month had mysteriously disappeared.

We ultimately decided to go to the hospital, because I was in serious pain and while I might have been able to last a few days to a new appointment, there was no way I could live through two and a half weeks.

So, this is where it starts getting a little funny. When you go to the emergency room and you look like you’re sixteen years old and you say “I think I have a tumor in my neck that’s compressing my nerves and causing me massive pain and loss of cognitive and motor function,” people are going to think two things:

One, they’re going to think you are a hypochondriac and have no idea what you’re talking about.

Two, they’re going to think you googled your symptoms and picked the worst possible option Web MD gave you.

Either way, they aren’t going to take you seriously.

So they had my mom and I sit in the waiting room for like an hour and a half.

When they finally pulled us back, the doctor came in and said it was probably a zit or abscess. He did an ultrasound on my neck and said he was pretty sure it was a zit. My mom asked him how sure and he said he’d only ever seen a handful of neurofibromas, but he’d dealt with hundreds of abscessed zits. So he was pretty sure.

This whole time I’m just thinking, “Wow, I am making a lot of fuss over a zit.”

He said he could send me home with a hot compress to lure it to the surface and pop, or he could cut it open and lance it. Waiting around with a hot, wet pad on neck sounded like zero fun, so we decided to cut it open.

Then they moved me to an actual treatment room and he went off to get supplies to pop the supposed zit. He came back with numbing fluid and gauze. Now, while we were waiting for him to get the supplies, I googled what he was about to do. The internet said that an cutting into an abscess should almost immediately relieve the pain and pressure, because the fluid inside would start to drain. So I knew what to expect.

So I was laying there, face down. I couldn’t feel him cut because of the numbing shots, but I felt a little pull and something liquid slid down my neck and I thought “Okay, that’s it. I should start feeling better now.” But nothing really happened. I’m aware I can be a little impatient at times, so I gave it a couple more minutes, but nothing changed.

This entire time he was still cutting and pulling at my neck, so I opened my eyes and realized there was a LOT of bloody gauze on the tray. And he just says, all casually, “Turns out it is a neurofibroma.”

And I’m like, “Really?”

And he says, “Yeah. I’m just surprised because they don’t happen often and they’re usually not all wrapped up like this.”

My first thought was relief, because I’d already told everyone on twitter that it was a tumor and I was not looking forward to explaining it was just a zit. Second, I was proud of myself for being right and asserting myself. Third, I was suddenly very nervous because this guy had told us before he’d only ever handled a couple of neurofibromas before and he was much more of a trauma and cardio doctor than a nerve specialist. Now he was cutting a tumor out of my neck.

So he kept cutting and tugging and snipping things, and every few minutes I’d just wiggle my toes to make sure I still could. Eventually, he got it out and he showed it to me, it was really tiny, like the size of a pea or the head of an earring, but that turns out to be a lot when it’s inside you, pushing against a whole bunch of nerves and tissue.

He stitched me up and went to get a discharge nurse. I had my mom come over and take a picture for my normal neurologist and she really didn’t want to. Apparently, she didn’t hear him clarify that it was actually a tumor, so she thought he’d spent all that time stabbing a zit. When I told her she freaked out because she said she wouldn’t have let some random ER doc cut into my neck if she’d known it was a tumor. “He could of paralyzed you!” She said.

I was actually very happy. I knew exactly what was wrong with me and I was right. I was very proud of myself for being assertive and taking my symptoms seriously, but then a few hours later after the medicine wore off and I could actually feel the pain of having surgery on my neck I was less happy. I’m still very sore and my brother’s been calling me Frankenstein because I walk very stiffly and can’t move my neck that much.

I am a little freaked out by this because despite being so sure, I wasn’t positive myself until it was actually proven. I’m nervous because if you start getting neurofibromas with my condition, they tend to reoccur and grow elsewhere, so with the future of my health insurance so unsure I’m worried about monitoring my health long term. This caused me a lot of problems and I’d be in a lot of trouble if I got another one but couldn’t afford to have it removed.

Anyway, I felt like this was a good story to share to explain why I was absent a lot over the past week and why I might be a bit slow for the next few days. I also thought it was good to share my story to help others who might be suffering the same thing or who think they might not be taken seriously by their doc. It’s really frustrating when you’re well educated on your condition and people still dismiss you.

Thank you as always for watching/reading. A reminder if you wouldn’t mind, I’d really appreciate if you could share my family’s GoFundMe link. I’m sorry this video was so long. I’ll see you soon. Bye.

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