TW: suicidal ideations, medical abuse Five years ago I was healing at home post-op after brain surgery. My surgery was a success but the whole process was miserable. My surgery was postponed the morning I got there. I was so thirsty waiting for hours with no fluids. 1/22
A nurse came by and took my temp and a half hour later I was told my surgery was being put off because I had a fever. I ask them to retake it, temp is fine. The nurse switched two of the numbers on the paperwork. So I wait even longer because they had called off the surgery. 2/22
I woke up after a successful decompression and fusion for an Arnold Chiari Malformation and cervical kyphosis that used my own bones for the bone graft. I thought I was dying. I could barely talk I was in so much pain. 3/22
My pain MGMT team hadn't looked into (what was back then) an experimental drug I was on called low dose naltrexone. I woke up thinking I was dying. No opioids or narcotics would work since I had taken meds up to the day before surgery, as directed 4/22
I spent the first night in the ICU without sleeping. My family couldn't stay. One of my machines went off beeping for what felt like hours. I pressed my buzzer, tried to call out to a nurse, but no one came. 5/22
Nurses and Drs might think it's no big deal when doing rounds. You might assume your patient is fine. But I wasn't. I was immobile, completely unable to move, tied to an IV line that was blaring, and basically delusional from physical stress and lack of sleep. 6/22
I wondered "maybe they aren't coming bc they know I'm ok. But what if I stopped breathing? Can I trust them to come then? Can I trust them to notice? Can I trust them to hear that beeping and come? When they're not coming now?" 7/22
I thought I was going to die of medical neglect. I was so sure of it. I was so relieved when my nurse finally came. Then she asked about my pain levels, and told me I should just try to sleep it off best I could. I stayed awake all night waiting for day to come. 8/22
The next day the pain MGMT team finally came by my room bc my parents demanded it. They called my pain mgmt doctor states away, who told them they were idiots. They switched me to IV Tylenol which gave a little relief. 9/22
I was switched to a regular room. Spent one day there. Then woke up to someone ripping bandages off my neck at 5 am. I still don't grow hair there where they forcibly pulled it out by the nape of my neck. 10/22
Later that morning I was told I could leave. It had been under 48 hours. I hadn't seen my surgeon since surgery, only his med students. I hadn't walked yet except for the few steps to the bathroom. 11/22
I wasn't on IVs though, because nurses had already blown five veins. They gave up that morning when my latest vein closed up. It'd be easier to just release me. If I wasn't on IVs, the hospital said, I was a candidate for release 12/22
I asked for IV Tylenol, and was told it was too expensive of a drug to keep me on. So I should wean down to ibuprofen. I had just had my skull cracked open and vertebrae fused together. 13/22
They gave my mom a ton of opioid/ narcotic scripts, even when I told them it wasnt a valid pain MGMT plan as I had never responded well to those drug classes and was still coming off LDN. She couldn't even fill them at the hospital pharmacy bc it didn't take our insurance. 14/22
And then she was questioned while trying to get them filled at CVS. It didn't matter anyway, when I came home they went straight down the toilet. Now years later I've been diagnosed with MCAS, and I've been dx with allergies to those classes of drugs. 15/22
But back then no doctor believed me when I said they made me feel sick to my stomach, dizzy, hot, unable to focus, with fading consciousness. Back then it was take these or refuse any treatment. 16/22
We complained to patient advocates, and received another day in the hospital. Then I spent the next few days waiting for my post op check in at a hotel. 17/22
Crying as my mom bathed me, helped me to the loo, and made sure I was cocooned in pillows 24/7. I barely remember living through the trauma of hospital abuse and medical neglect. 18/22
But I still shudder when I walk through hospital doors. I still dread meeting doctors. I have no faith and no hope in securing empathetic care, because it didn't happen then, and it hasn't ever happened since. 19/22
I was suicidal for months after my surgery. I walked around my house without pain meds like a ghost. I learned harmful disassociative coping methods bc Drs didn't help me, didn't follow up, didn't provide sustainable care. 20/22
Now five years later I'm almost a doctor myself (no not that kind, the academic kind). I am proud, and endlessly thankful to my family and friends, for keeping me alive through something I would never wish on anyone else. 21/22
I'm proud for surviving. And for thriving. I hope your patients don't have to be proud of the same. I hope you do your job to support them throughout their healing process. #MedTwitter #MedEd #DisabilityTwitter #ArnoldChiariMalformation 22/22
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