I’m sorry if this post is a bit too long or emotional, but I would really appreciate if someone read it and told me their thoughts. I feel very isolated in my experiences, and I would really appreciate being heard.
I was 18 years old when I made the worst decision of my entire life.
I used to work at a restaurant, and developed worsening upper back pain. I stupidly pushed through it, thinking it wasn’t too big of a deal. One day when I was working, my arms went nearly limp in an instant, and I could barely move them. I went home early, and my parents told me it wasn’t a big deal. I was freaked out, but weakness subsided after a week.
Although not taken until much later, an MRI scan would later reveal a herniated spinal disc at vertebrae C7-T1 making contact with my spinal cord. This event set the stage for the horrors that awaited me.
Whenever I bent my neck over too far or lifted a heavy object, I would have a dull pain in the location of the herniated disc, indicating pressure in the area. One day later, I would get a surge of neurological pain and sensations across my entire body. At first, it was localized to my arms and legs, but then it spread to everywhere else below my neck. These flare-ups were very painful and distressing, and lasted for weeks at a time, before dying down to some minimum constant level of pain.
My parents told me it was no big deal, probably just pinched nerves. Then for class one day, I looked down for 2 hours to take an exam. And one day later, it took over my entire body.
Now, even my face and head were in pain and having random muscle twitches, I developed POTS, I had pain and flashes in my eyes, and my vision became permanently darker. I felt random acceleration, my pupils were rapidly growing and shrinking, I had to pee every 5 seconds, one side of my face began drooping, my throat was twitching, I felt like I had to throw up constantly, and I developed tremors.
Desperate to hold on to this less terrifying pinched nerve theory, I discovered a harrowing implication: the nerves that innervate the face, eyes and vestibular system are attached to the brainstem, not the spinal cord.
I sought medical treatment immediately. All of my vitamin levels checked, all common diseases checked for, like Lyme disease, even more obscure metrics like copper levels. All normal. I finally got to see a neurologist, and he told me it was just small-fiber neuropathy. I asked him about the other issues I had like visual disturbances, the sudden onset of POTS I had just gotten diagnosed with, and the muscle movements (small-fiber is supposed to be sensory and unrelated to spinal injury). He simply waved those away and said that might be something unrelated, despite the fact that it all happened right after I bent my neck and I was completely healthy before all of this. I saw another neurologist, who told me to just listen to the first one.
A spine specialist told me that the spinal cord “still has room to move around,” with regards to the herniated disc being in contact with it, but the fact that pressure there corresponded with a neurological explosion of symptoms the next day, every time and without fail, seems VERY suspicious to me. My PCP also mentioned it as something concerning.
One time, I had an episode of confusion and could barely move my arms and legs, so I went to the emergency room. After waiting 15 hours, they told me to just go home.
Meanwhile, my parents told me I was overexaggerating and my dad even told me I was making it all up for attention. Having gotten extensive tests and being dismissed by doctors and everyone around me for months on end, I just gave up and accepted the outcome, even if it meant death. I had developed extreme anxiety as a result of watching my body’s systems failing every day, so my PCP offered anti-anxiety pills. I took them and tried to forget about everything, telling myself that everything will probably be okay if I just never bend my neck the wrong way ever again. Obviously, not the greatest long-term strategy, but I wanted to return to some semblance of sanity. It was an extremely horrifying and painful experience for months on end, filled with feelings of dread, horror, and betrayal, and I was just so tired at this point.
I am now 21 years old and it has been over 2 years since this all began. Most of my symptoms died down to a low level, but I still occasionally get a new one. (Now, I also suffer from loud auditory hallucinations and my breathing randomly stopping when trying to sleep.) It seems that the progression hasn’t stopped, only slowed significantly, since I haven’t gotten another flare-up yet.
Considering that I’m not dead yet, I started wondering if I still have a chance to turn this around, maybe at least get surgery to move the disc out of the way. But considering how badly things went 2 years ago, it feels like a very tall order. How do I ensure that doctors look into the issue more instead of giving me an unfitting diagnosis and dismissing the wider context?
Unfortunately alls I can give you is more uncertainty. My wife has a multitude of issues that we try to get through but one that is floating above us is a very similar back problem. We are old enough to have experienced insurance roulete and when she was young she was in a car accident where a semi accordioned the car she was in. She has issues with both lower and upper spine but at this point we don’t really see any real solution besides fusion. Which we have seen enough issues around that such that we want to avoid it until its just to bad to ignore. So basically as long as she is not in a wheel chair we likely won’t go that direction. She sometimes gets pain shots and out of some desperation she gets chiropractic (insurance will pay for unlimited chiro but limits physical therapy). We get by because we are sinks where I am the bread winner. She can do things in moderation but generally she can’t sit or stand in on position very long and when she does things she is on this clock where if its kept down to an hour she might be okay but if it goes to two there will be repercussions and if its many hours then it can lay her up for days. Essentially she is quasi bed bound where to stay functional she must be in bed more often than not through out the day. Sorry this is not more helpful but maybe it will make you feel a bit better in terms of other people do face issues like this.