Alright… So I wasn’t planning on making this a post, but I had actually posted a video years ago on my Lyme Disease story up until about 2015. I received some amazing feedback and a lot of people reached out to be after that, so I decided to make an update after tons of other things have happened since then! While a lot has happened, I decided to make an update on the weirdest and most…interesting thing that has happened since that video a few years ago.
I had a lacrimal gland tumor.
Sounds weird, right? I’ll start from the beginning, but you can watch the video above to just hear it all!
Starting out, I started having a weird “ball” pop out of my eye beginning a few years ago. It probably started during my senior year of high school and it was just a squishy ball that would pop out between my eyeball and the socket bone. I didn’t think too much of it at first, but went to the doctor after it was there for a few months and not going away. At this point, it would pop back in if I poked it and it honestly didn’t bother me!
After going to a family practitioner, my doctor told me that I was fine and it was either scar tissue from the scar I already had on my eye, or it was a blood circulation issue with allergies. Either way, he didn’t think it was a big deal and it would clear up.
Then the pain started…
I wasn’t focused on my eye for a long time because I had some other health issues going on. However, toward the beginning on 2017, I started having a lot of migraines and symptoms that caused me to rarely get out of bed. I wasn’t driving because of the pain and I didn’t have the ability to get out and exercise or even go out and do the regular things I loved; shopping, hanging out with friends. I really stayed in bed for a long time and never knew when a migraine was going to come on.
I decided to go to the doctor when my migraines would last up to 3 days on end and I didn’t want it to affect my life any more. So, I went to a regular doctor and asked them to look at my eye. At this point, the ball was always popped out and wouldn’t go back in when I poked it. The doctor thought it was just fatty tissue and said it wasn’t a big deal, but I told her I wanted a further referral because I wasn’t happy with her answer.
So I got a referral to an ophthalmologist. Again, I was told that it was no big deal. She figured that either my lacrimal gland was out of place, which wasn’t a big deal, or it was fatty tissue poking through, which also was fine. She did a full workup and said she didn’t think anything of it, but she would refer me further because of my migraines.
And so, yet again, I waited and eventually go to my Oculoplastic surgeon, which is usually a reconstructive surgeon for the eye area. She took the initiative to finally get me a CT scan (keep in mind this was months since my first appointment). And when we finally got the scan I had wanted for so long, she found something.
Tumor and Removal
I got the call that that the can had shown a 6mmx6mmx5mm mass that was either attached to or sitting on my right lacrimal gland. This is the gland that is in the ocular cavity, kind of behind and above the eye (near the brow bone). Finding something here was not only exceedingly rare, but very often cancerous as well.
So, we scheduled surgery to have a biopsy and removal. I would have had to wait until Christmas break for the surgery if I wanted to be asleep, so I decided to have the surgery wide awake in November. It was the weirdest experience I’ve ever had, being away while my eyelid was cut completely open from one end to the other.
The surgeon went in and removed most of (we’re not sure if it was all of it or not) of the mass and sewed me and sent me on my way. A few weeks later, we got the call that the mass was not cancerous, but rather inflammatory. So if you see what I’m getting at, we believe that because there is no explanation as to why I got an inflammatory tumor on my lacrimal gland, which is a rare spot to have something like this at all, we believe that Lyme Disease is what caused it (this is an inflammatory infectious disease).
Unfortunately, there aren’t many options going forward for preventative measures. I still have eye pain often, migraines less often than before, and my eye gets inflamed. Because I won’t take steroids long term, we simply wait and see if the mass grows back or not. According to the little research completed on such an odd condition, they often do grow back. Therefore, we just wait and see.
My favorite website to learn more about Lyme Disease: http://www.ilads.org
Learn more about lacrimal gland tumors: http://eyewiki.aao.org/Lacrimal_gland_tumors