Tell me how does it feel

This week, since I don’t have any exciting updates, I figured I’d tackle the question I’ve been getting most often, which is “How do you feel?” I’ve talked about the symptoms I’ve been having in a few of these things, but I’ve never really laid it all out, so now feels like as good a time as any to do just that.

Before I went to the hospital, I went to my eye doctor. The first symptoms I noticed were vision-related, namely dark little floaters constantly swirling around. This wasn’t something totally new, but unlike other times it had happened to me, these never went away. Soon, it stopped just being floaters, and the only way I could describe it was to say that my vision felt out of alignment. It wasn’t a perfect description, but it was the only way I could think to express it. Now, after a couple months of explaining this feeling over and over, I’ve gotten a little better at putting it into words. I tell every doctor I meet with that I can tell that the room I’m in, or the things I’m looking at, are level, but I feel slanted. I know the shelf in my bedroom isn’t at an angle, but I feel like I’m 15 degrees off. And on the day I decided to go to the hospital, I remember looking at the t-shirt I was going to wear, which had a bunch of straight lines running up and down the back, and they were swaying back and forth like a flag in the breeze.

This sensation is part of why, before I even knew what was going on, I had to cut out activities that only highlighted how off I felt. The first thing to go was biking, which I’ve done, more or less daily, for the better part of a decade. When I was on my bike, I could tell the ground wasn’t angled, but when I looked down, it felt like I was leaning heavily to my right side. I started overcompensating to make up for what felt wrong and, as a result, I never really felt locked in, much less safe, riding around. Similarly, I tried playing drums and every hit felt wrong, like no matter how hard I tried, I just couldn’t hit my marks.

Shortly after that, I felt my balance start to go a bit. I never fell down, though in certain moments, I could feel my equilibrium shift enough to make me think I was going to. At first, I thought this was just a byproduct of my vision suddenly being so bad, so that’s what made me decide to go to the eye doctor. They put me through all the tests and everything looked fine, so they told me it was my “focus center” acting up, but it should return to normal in a week. I was told that if it didn’t improve in that time, I should go see a doctor. I took it as encouragement that nothing was wrong, that whatever was happening was just some anomaly that would just go away one day. But, as you may have guessed, that’s not how things played out.

Instead, I started having issues both with writing and speaking. They were subtle enough that no one else would notice, but I could feel it, and it scared the shit out of me. I’d get distracted midway through a task and completely forget what I was doing. I noticed an uptick in spelling errors, specifically with homonyms (write/right, their/there/they’re, etc.), and I started jumbling words together as I typed, or just writing the wrong thing entirely. Similarly, when I was talking to people, I’d have the constant feeling that whatever word I was looking for was on the tip of my tongue, but I never could reach it.

Then came the issues with my motor skills. Making coffee one morning, using the same process I always have, I was forgetting the steps. Then I was forgetting where I put something down. And finally, I started dropping and knocking things over. I felt completely out of control of my body and mind, so I went to the doctor. And that’s where this story actually begins.

It’s hard sitting across from a doctor and explaining your symptoms to them only to be told they don’t make any sense. This is part of why I’ve been sent for the wrong tests and bounced from one specialist to another, because as best as I can tell, there’s not enough evidence to know if this is all related or not. Which has sent me down the path of reading things online to try to find some correlation, or at least feel like I’m not just making this all up.

The first site I found when I was searching for carotid body tumors was the Weill Cornell Brain and Spine Center, and if you want a brief rundown on everything from actual doctors instead of some goober with a newsletter, I recommend giving it a read. But, for the purposes of this discussion, I’d like to refer to the “symptoms” page, where they list the following:

• Hoarseness
• Difficulty swallowing
• Partial paralysis or numbness in the tongue
• Weakness or pain in the shoulders
• Vision changes, or a drooping eyelid
• High blood pressure or heart palpitations
• A bruit – the distinct whooshing sound of blood pushing past an obstruction

Okay, well, those all sound pretty different from one another. The “vision changes” portion seems applicable to me, so that at least puts me on the right track. But now, we need to consult both the US National Library of Medicine and the National Institutes of Health, where a study of 18 different people with carotid body tumors was conducted. Taken in full, it’s a really interesting read, but again, let’s jump to the symptoms portion.

Hospital visit due to painless masses under the mandibular angle was found in 18 cases complicated with hoarseness in one case and bradycardia and faint in one case.

Now, that’s not the most exciting sentence in the world, but what it says to me is this: There’s no clear picture of what happens when someone has carotid body tumors. Maybe you have a sore throat, or maybe your vision is weird, or maybe your shoulder and neck hurt, or maybe you’re having decreased blood flow, or maybe you’re fainting. Or maybe something else is happening and, honestly, who’s to say if the tumors are causing it?

For the final piece of this weird book report I’m making you all read, let’s go to the source I’m most familiar with, and that’s the fine institution known as Cleveland Clinic. They’ve got a couple short paragraphs on the subject, but here’s the most relevant sentence for you.

You have two carotid arteries ─ one on each side of your neck ─ that supply blood to the front of the brain, which is responsible for thinking, speech, personality, and sensory and motor functions.

Well, shit.

Since the jump, I’ve been under the working theory that, if there’s something messing with the blood flow to my brain, it’s probably got something to do with all the weirdness I’m feeling every day. When I bring this up to the doctors I meet with, they don’t refute it as much as they shrug their shoulders and say, “Well, we can’t say with 100% certainty it’s related, so we’re going to say nothing at all!” And as frustrating as that response is, I totally get it. It’s incredibly hard for someone to look at a disease that’s fairly rare and say exactly what’s going on. So while I don’t fault them for that, it doesn’t make hearing it any less frustrating.

By and large, my experiences at Cleveland Clinic have been overwhelmingly positive. Whenever I see anyone on staff interacting with a patient, they seem fully present and attentive. There’s a kindness to every interaction I see, and it only highlights how awful the care I was receiving in Chicago was. Even in these early stages, that’s made it easier for me to trust the people I’m meeting with, as I feel like I’m finally in the right hands.

But despite all of that, no one has been able to directly correlate my symptoms with the tumors on my arteries. The ENT I met with last week said as much. “This may have been an incidental finding,” is the way he phrased it, and that very well could be the case. But no one has found anything else wrong with me, so to quote the doctor I met with three weeks ago, “We have to treat what is there.” And that’s what I’ve decided to do.

Maybe the CBTs (this is short-hand I’m gonna start using to look cool with all the doctors I meet) in my neck are throwing everything out of whack, or maybe they are just there and there’s some bigger problem no one else has found yet. Whatever the case may be, I’m still impaired daily, and things have only gotten worse. As the seasons have changed, and my allergies have acted up, I’ve been experiencing the hoarseness and difficulty swallowing that the Weill Cornell Brain and Spine Center mentioned above. And maybe it’s not related to the tumors, but like all things, if I’m going to make an educated guess, having nearly four inches of my neck taken up by tumors means that they’ve gotta be gumming up the works at least a little bit, right?

Or maybe none of these things are related and I’m just desperately reaching for answers in whatever places I can find them. I honestly don’t know anymore, and it seems like no one else I meet with does either. So I guess we’re all going to find out together.

Next week, I’m going to do something different and run a fun little interview because it’s my newsletter and that’s what I want to do, dammit! I hope you enjoy the brief intermission from medical mumbo jumbo as much as I will.