San Juan, Puerto Rico

Katelyn Lent

First post: Jan 17, 2022 Latest post: Apr 7, 2022
Welcome to my CaringBridge website.  My family and I appreciate your support and prayers. Thank you for visiting :)

My back started hurting in the Fall of 2017. It was hurting in my mid back, right on the spine. At this point, it wasn’t constant pain but it was frequent enough to warrant concern. I didn't have any injury so there was no reason for it to be hurting. After dozens of trips to the chiropractor, to no avail, I went to see Dr. Likness at Hudson Physicians. 

In January of 2019, I had my first MRI of the thoracic and lumbar spine. We discovered I have Scheuermann's Disease, a degenerative disc disease (DDD) in my thoracic spine. This kyphotic disease is normally painless unless the patient has very severe curvature of the spine. Fortunately, my spine had a normal curvature and no kyphosis had presented itself. The main factor that diagnosed me was having Schmorl's Nodes, a telltale symptom of Scheuermann's Disease at my age. Schmorl's Nodes are typically painless projections of the disc into the bony tissue of the vertebrae. Many elderly people have Schmorl's Nodes due to regular degeneration. Most people who have Schmorl's Nodes don't even know they have them. Based on my new diagnosis, we were told it would likely stop hurting when I was done growing, so we had to play the waiting game. There is no way to fix or reverse degeneration, so my new goal was focusing on pain management. Over the next 3 years, it became like my full time job (with no benefits or pay...not even dental). At some point early on, the pain became constant. It hurt the worst in the morning right when I woke up and anytime after strenuous physical activity.

We tried just about everything under the sun: 
♦Chiropractic, strength-training physical therapy (they strapped me into this scary chair thing), cupping (really wish she coulda put the cups on my arm or something so I could see it because it’s pretty cool), acupuncture (luckily I’m not scared of needles), craniosacral therapy (I learned my jaw is crooked), pain therapy (therapy over Zoom ain’t the move), and seeing a nutritionist (I only fainted twice).
♦More than 10 drugs (Target CVS for the win), ranging from antidepressants (to change my nerve firings) to muscle relaxers (to aid my back muscles in supporting my spine) to anti-inflammatory (to lower the amount of inflammation in my body). “More than 10 drugs” doesn’t sound like much when you’re just reading it, but try to picture. This took years. More than 10 trials, more than 10 errors. Some of these drugs took multiple trials each to try different dosages. More than 10 different combinations of strange stuff, some of which had adverse effects on me. The antidepressants really messed with my head and if your mental health isn’t good, your physical health will only get worse. And it takes a long time to get that stuff fully out of your system. My favorite drug I tried is Tizanidine. We started at 2 mg and I had no adverse effects, so the Doc upped the dose to 4 mg. If you were ever lucky enough to be in a class at school with me (especially PreCalc!!!), you perhaps have seen one side effect of Tizanidine. Drowsiness. Rather extreme drowsiness. I still have a sheet from sophomore year AP Human Geography class where I was trying to write down vocab. The handwriting itself is very faint due to the lack of strength in my hand, but the more amusing part is every little random looking slash that shows my pencil falling, signalling a time I fell asleep. I count at least 12, and my pencil didn’t leave a mark every time I dozed off (the only reason I’m writing this now is because it’s been two years so I think I won’t get in trouble).
♦A TENS unit, ice, heat, Biofreeze, Arnicare, and other topical medicines that my lovely mother applied to my back. 
♦Stretching and core strengthening. I was told that if I got a stronger back and core, my muscles would be better able to support my spine and my back would hurt way less. This led me to swimming. Swimmers have strong backs, so we figured that would be a good way to get exercise and hopefully help me out a little bit. I’ve been swimming for a few years now, and I love it. I think being a swimmer basically makes me a mermaid, right? I continued to stretch and do core exercises, all the while swimming, but my silly back decided to just. Keep. Getting. Worse.

Most of the things I listed above didn't even touch the pain, and none of them provided much relief. As you can see, I was failing at managing the pain, which only worsened as time went on. Flare ups would last for months on end and would leave me stuck in bed and unable to do the things I love.

The thing about chronic pain, especially when it’s really bad, is how alone you feel. You’d never wish what you are going through upon anyone, and yet sometimes you just want someone to understand. It hurts. It takes up so much energy to just be in pain all the time. People don’t always understand how you can be active and moving one day, then in bed all of the next. I myself am included in this. Too often I’ve pushed myself too far, trying to be “normal” and not realizing my limits. This always just leads to more pain and lots of frustration. I learned that I need to be kind to myself, and realize that my body is dealing with a lot. In the same way, y’all out there who are dealing with chronic issues need to be kind to yourself. Learn from my mistakes. Further, I know I’m not the only one who knows how mighty disheartening it is to hear many doctors in many different specialties tell you they have no idea what’s going on. We all love to be special…except in cases like these. Just remember, it’s not all in your head. 

In February of 2021, I got an Epidural Steroid Injection into one of my discs. It injected a steroid between two vertebrae, in a hope to stop the pain. It also didn't work.

In March of 2021, my mom, dad, cousins, aunt, uncle, and I went to Puerto Rico and I think that was the fix!! :) I think I just need a few more weeks (or months) (or years) down there and I'll be all better!

In April of 2021, I got my second MRI on my back to see if anything had changed in two years. Nothing jumped out at doctors with a big sign saying "I'm the reason!" (ex: a tumor)

In October of 2021, Dr. Likness put in a referral to Mayo Clinic in Rochester. 

On November 19, 2021, opening night of our school's musical, I got a Medial Branch Block. Instead of 1 shot like the ESI was, this one was 6, blocking the nerves of my facet joints at 3 vertebrae (pretty weird to see 6 band-aids clustered on your back). I got no pain relief, but it was fine because I had to be mean in the show so it just fueled my mean-ness. 

On December 14th, we went down to Rochester to do an X-Ray, bloodwork (the cold spray is very helpful), and a CT scan. The next day, we met with Dr. Shaughnessy. We were pretty desperate for answers. I was done growing and it was still hurting, even getting worse. At this point in time, I could barely go to school because of the pain. I was always exhausted because the constant pain was so draining. Wanna guess what Dr. Shaughnessy said??? 
     A) He has no idea
     B) He found something new that is the cause of the pain
     C) The answer was right under our noses the whole time
     D) All of the above
     E) None of the above

If you guessed A, you’d be wrong (that’s what I guessed too, we’re both losers). If you guessed D, obviously you’re wrong. If you guessed B, you’d also be wrong. If you guessed E, guess what? You’re wrong. That leaves C: The answer was right under our noses the whole time. If I have done a good job writing this, you all should know the answer too, as I put it right under your noses (my English teachers would be so proud; they say a good essay always circles back to the beginning. And I did). 

The very reason I was diagnosed with Scheuermann’s Disease all those years ago. Schmorl’s Nodes. I tricked y’all!!! I said they were typically painless, which they are. Not mine though, mine are built different (I’m not the only one in the world with painful ones, but it is rare). They believe a defect occurred while I was in utero to cause the nodes to occur so early in my life. 

So on February 2nd, 2022, I shall be on the chopping block to get a spinal fusion surgery. They’re gonna put screws in my vertebrae and connect them with a rod so that the discs are stable and the vertebrae can’t move. The movement is causing the pain (to the best of my understanding). 

We will post journal entries as the surgery date approaches and as I recover :)