MY JOURNEY

PART ONE: THE START

It all started back in 2007 I guess.

I was 9, doing cartwheels all around the house, quite typical of me at the time, and I fell and landed on my arm. I went crying to my dad, convinced that I sustained a broken bone from my fall. Knowing very well that I was a dramatic 9 year old that needed attention, my dad started examining my arm “to see if I had broken it.” He was squeezing up my arm asking if it hurt more, it didn’t, and he lifted my arms up on either side to compare the two. 

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As he did so, he saw something he hadn’t ever noticed before: my arms were completely different shapes. My right humerus seemed to sag almost - as if part of my bone was jell-o and my arm created a sort of U shape. 

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Not quite knowing what it meant, and with my mom being out of town, my dad decided to take me to the emergency room to get a better look. I remember getting there and the doctor doing a very similar physical evaluation that my dad did in the living room. My arm didn’t hurt anymore at that time and because the doctor could tell I wasn’t in pain, he tried sending me on my way.

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My dad knew better. There was no reason for him to know what was going on - and he didn’t - but he knew there was something. So he demanded an x-ray. As soon as that came back, the emergency room doctor told my dad that it looked like something he knew to be called Ollier’s Disease, a rare disease that causes mainly benign cartilage growths in the bones, but we would need to see a specialist. 

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I don’t remember the following events all that well, but I know that was followed up with a visit to a wonderful doctor in Detroit, and a surgery to remove the tumor. We were told the protocol for this disease: yearly bone scans for a few years, and once we are confident things are stable, move to scans every three years.    

At the time we found that first tumor, we found a few more down my right arm and into my hand. They were not anything to worry about so the doctor told me I can get them out if they become bothersome, but otherwise we will not worry about going through an additional surgery. 

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By the time I was 11, those tumors in my hand started to impact the range of movement in my fingers. Considering I had musical and sporting hobbies, I decided to get those tumors removed as well. 

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Years went by with scans every few years, and nothing to report. When I was 17, a senior in high school, I started having issues breathing through my nose. After going to my primary care physician, we found out that I had a tumor growing near my nose, right where my nostril meets the skull. I got that removed just after my senior year of high school. 

All of these surgeries were rather easy on me. They all had quick recovery times, little lasting side effects; I had almost no issue with them.

I’m now 24. Over the years we’ve found a few more tumors that are causing me no issues - therefore having no need for removal. I have one on my sternum, two in my pelvic bone, a few more near my right elbow, and a few on my spine (those are new and will be touched on in other posts).

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All in all, as I understand it, as long as you’re aware of this disease and have doctors that can help you follow the correct protocol, it’s rather easy to stay on top of. It becomes hard, though, because there are so many things that this disease can turn into, primarily malignant tumors. 

There is a 1 in 4 chance that these bone-based tumors can shift and start attacking soft tissue, such as the lungs, liver, pancreas, uterus, and brain. 

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As I’ve said, this is a rare disease, and 1 in 4 of those 1 in 100,000 becomes a very small number. Because of this, few people really understand what all of it means, including many doctors. I’ve been fortunate enough to be blessed with doctors that both know about this disease, and are open minded enough to hear the research that my mom and I bring with us to appointments. 

Anyway, this is the point in the story where things start shifting from my bones to my brain so… I’ll see you in the next post! 

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Thanks for reading this far <3 

PART TWO: THE BRAIN STUFF

The beginning:

This story starts off my sophomore year of high school, at the beginning of the spring sports season. I was on the track team, and more specifically, I was a pole vaulter. In March in Michigan, there is still quite a bit of snow on the ground, so all spring sports are forced to practice inside. 

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I was running slightly late to practice one day, so I had my shoes in my hand and was running up the stairs to the balcony where the pole vaulters were practicing. To get there, I had to pass near the batting cage. All of the baseball players were waiting around the cage while one player was inside hitting the ball. As I was passing through, one of the players tossed his bat over his shoulder, and in doing so, hit me square on the forehead. 

I was pretty significantly concussed, and had some of the typical symptoms of a concussion - throwing up, confusion, and severe headache. A few weeks following this incident, though, after all of my other symptoms had subsided, I began having the strangest type of double vision. As I tried to follow my finger across my vision, my right eye would lock on to my finger when it was on the right side of my vision, and my left eye looked like a lazy eye, but as soon as my finger passed to the left side of my vision, my left eye would lock on to it and my right eye looked like a lazy eye.

First Diagnosis:

This all felt weird enough that my parents decided to take me to an eye doctor, who referred me to a neurologist, who ordered me an MRI, that showed I had multiple “white spots” in my brain. They didn’t really look like anything typical. They didn’t appear to be tumors, they weren’t TBI’s, and they didn’t quite look like MS lesions.

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I was bouncing around from specialist to specialist, waiting months between appointments and scans and it was getting exhausting. So, my mom decided to schedule an appointment at the Mayo Clinic. Within a few days they preformed multiple tests and scans, I had met with multiple doctors, and walked away with a diagnosis of Multiple Sclerosis (MS) and Postural Orthostatic Tachyardia Syndrome (POTS). 

Over the next two or so years, I tried multiple medications. The first was a shot I had to give myself every night - that gave me welts the size of a softball around the injection site that would itch and burn and eventually turn to bruises. The next two were shots that I had to give myself every other day, and both of those gave me similar reaction.

After failing those medications, I was able to try a much newer oral medication, a pill I had to take twice a day. The side effects from that one consisted of hives, heat flashes, shakiness, and nausea. I had to take an additional five medications just to try to counteract the side effects. 

This back and forth of medications took a tremendous toll on me both mentally and physically. Starting and stoping medications in general can be very traumatic for the body. Especially when it’s so many medications in such a short amount of time. 

Next “Diagnosis”

After four failed medications and symptoms that were only getting worse, my mom and I began to question my diagnosis. It is uncommon to be diagnosed with MS at 16, and none of my symptoms seemed to quite line up with MS symptoms. MS is a rather individual disease - meaning that it effects just about everyone a little bit differently. Because of this, when I would tell my doctors what I was dealing with, they would often say something along the lines of, “hm, most people experience that a little differently, but it’s close enough.”

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I blindly listened to the doctors because I was 16, and becauase I assumed they knew best - I figured that “close enough” really was. My mom, on the other hand, had some doubts about what they were saying. Day after day she had been watching the effects these medications had on me while also watching my symptoms get worse. She decided to take things into her own hands and started doing some research of her own. 

My mom knew that my bone tumor disease was rare. She had the thought to see if Ollier’s Disease had any connection to growths in the brain. She found a few Facebook groups that she joined and started asking her questions and looking into other people’s posts. She found out that there were multiple people with Ollier’s related tumors growing in their brain that were originally misdiagnosed with MS. The more my mom was looking into this, the more it was sounding like what was going on with me. 

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She was lucky enough to come across a post from a 25 year old guy, Damian, from Australia. He was going on about his experience and some other things related. When my mom saw it, she messaged him right away. She asked him a little about how he finally got his diagnosis and how he went about talking with his doctors. At the time, I was in an in-patient treatment facility (for things unrelated to this) in Utah, so I couldn’t talk to him myself, but with my permission she sent him some of my MRI reports to compare to his. 

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After I got out of treatment, I was able to have similar conversations with him - and still do to this day. We have stayed in touch over the years, becoming pretty good friends in the process.

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Armed with some of the information from Damion and others, my mom and I went back out to Mayo. We shared our findings with my various doctors there.

None of them seemed to agree on my case after reading everything we brought. One doctor was convinced it was still MS and we should stop questioning it.

Another doctor thought that it was possible I have both MS and tumors in my brain. The doctor that actually sat down with my mom and I to talk it all through, though, seemed to completely agree that it was brain tumors.

Move on to the next post to get a more in-depth look into the effect these “white spots” seemed to have. ✨

PART THREE: THE "WHITE SPOTS"

This leg of the story is probably the shortest, thankfully. 

In order to tell this story, I need to backtrack a little. 

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So, as I said in the last post, I was hit in the head with a bat. After the baseball bat incident, I began falling unconscious and having what looked to be seizures rather frequently. This still continues to this day, but back in high school at times I was passing out and having these episodes as often as 6 times a week. It got to the point that I had my own bed in the back office of my high school so that I had a place to go rest after I passed out. 

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Along with the passing out, I was experiencing loss of function of my legs frequently, I was having a hard time regulating my body temperature, and I seemed to be becoming more sensitive to everything - light, sound, textures, etc. 

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This was getting exhausting and my health was steadily declining. This is the point that I went to the Mayo Clinic and was diagnosed with MS and POTS. The MS diagnosis stuck for a while, but was eventually retracted and replaced with a diagnosis of “white spots,” or “lesions,” or “tumor,” or “cyst-Iike thing.” All very scientific, I know. The name of what I have in my brain still to this day depends on who you’re talking to.

As of the last few years, my main neurologist has been referring to them as tumors, so that’s what I do as well. It seems to be more spot on than anything else. 

SO -

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With the basis of that knowledge, maybe my symptoms with make a little more sense… Or at least it’ll make sense why no one can make sense of anything. 

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As I said in a pervious post, Ollier’s disease is extremely rare and can eventually travel to soft tissues - including by not limited to the brain. 

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That said, whatever is going on in my brain is not your “typical” tumor. 

It is such a long and daunting process - trying to explain your symptoms to a doctor without knowing how much of what you’re experiencing is just life and how much of it is tumor related. 

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Living with so much uncertainty takes such a toll on the body, mind, and spirit. And navigating all of that is exactly why I’m here writing this blog post now.

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I really had to step back and learn how to listen to my body, not only to give it what it needs, but to know when something is seriously wrong. 

And that takes us to present-day, keep reading ✨

PART FOUR: PRESENT DAY

In April of 2021 I developed an ear ache.

It continued to get worse over the next few days, so I went to an urgent care to see if it was infected. It didn’t seem to be, and I was told it was just allergies and was sent on my way. It was still getting worse and I’ve never had an issue with allergies before, so I went back to the urgent care. This time I was told I had a lot of pressure building up behind my ear drum, so I was given some decongestants, and sent on my way yet again. That didn’t work after a few days, so I go back again. This time I saw a different doctor that said my wisdom teeth could be bothering one of my nerves and causing pain. So I got my wisdom teeth out, let that heal for a few weeks, and had worse pain than ever before. 

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I went back to the urgent care for the fifth time. This time, the doctor said he has no idea and he couldn’t help me and I needed to see a specialist. He mentioned something about the trigeminal nerve, that it could cause similar pain to what I was experiencing, and that was that. 

I immediately called my mom and told her everything I was told, and asked her if it would be smarter to go to Mayo rather than going through the mess of waiting for a specialist just to have to see a different specialist just to do it all over again. So, we did. 

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I got a few more scans of my brain and spinal chord - this time finding out I have a new tumor in my brain (making that a total of 6) and two more in my spinal chord (making that 5). 

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While talking to my doctor, we decided to try a treatment for what’s called Trigeminal Neuralgia, which is a condition that causes painful sensations similar to an electric shock on one side of the face.

This is a condition where something, typically a blood vessel, presses up against your trigeminal nerve, causing incredible pain. I decided to go ahead with it, so in October of 2021 I had the first procedure done. 

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The point of that surgery was to deaden the nerve so the pain would stop, so the left side of my face was going to feel numb. And it sure did. When that happened, the pain I was feeling completely changed. I thought that meant the surgery had worked. 

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We decided to do the surgery to the smallest degree that we could, just in case it didn’t work. Because of this, and the fact that the pain was different, I went back in December to try again. This time, my face was numbed a little more, yet the pain persisted. 

Since those procedures, I have tried and failed three medications, all of which made gave me terrible side effects, I go more into that here. And I’m in the process of finding a different procedure we can try. 

I recently went to a local pain clinic. I know the Mayo Clinic has some of the best doctors and resources in the country, but I needed, and still need, as many brains working on this as I can have. 

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See, a hospital like the Mayo Clinic has a tendency to want to answer every question and get down to the root of the issue - very necessary, and going to be extremely fruitful in the long run I’m sure. But an office like this pain clinic that I went to, their biggest focus tends to be on the pain itself. 

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Thankfully, the doctor that I’ve been meeting with there seems to be very proactive and ready to do what he can to help my pain. 

At this time, that doctor has tried a steroid shot right into my nerves (ineffective) and what’s called a ganglion block (ineffective), and he’s working on an idea for the next procedure.

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I’m thankful for so many things in regards to the medical attention I’ve been given, but damn, it’s all been so hard. 

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It’s been such a long journey already, and that’s going to continue to be the case, for a while at least. 

As always, thanks for reading xx