Reaching out to my former doctor
Often I journal in the form of letters to people. Typically, i’m the only one that reads the letters; but I decided to send the one I wrote to my former doctor.
For background information, I saw a neurologist when I was ~13 years old with what I later learned was brain tumor symptoms. She tried one migraine medication, it didn't work and she said that it was probably periods and puberty. I asked her for an MRI, but she refused.
Me, 13, hugging my dog, Molly, at a park
When I was 20, I had worsening symptoms and a rheumatologist wanted to do a brain MRI, but insurance would only approve it from neurologist. He worked in the same building as her and I went to her again and he pressured her into doing it.
When the tumor was found, she told me they “often were fine” and just wanted to “watch it”. I went against her and found a neurosurgeon on my own and had it removed.
It was likely there for many years or even my entire life.
To the Doctor That Made a Near Fatal Mistake,
I first came to you as a teen. My symptoms were atypical and it was feared that a tumor could be the cause. You dismissed everything as puberty, periods, exaggeration, and probably psychological. When the symptoms weren't helped by treating any of those causes, you didn't do any more testing. Instead, you insisted that I was being dramatic and probably should see a psychiatrist.
Nearly a decade after my initial visits passed without any end to the pain and suffering I endured. I began to question myself and ask if I was actually crazy. I saw countless doctors and went through countless tests. Nothing. Hours and days and probably even weeks of my youth were spent in various clinics and hospitals. Years of pain and suffering continued.
I had countless tests to try to find the answer
During this time, I pushed myself as far as I could, trying to reach my goals, but only to be knocked down as they came closer to my reach. It was emotional hell as well as the physical. As my peers moved forward in their lives, I was stuck in the cycle of working and stretching myself thin to reach my goals, being knocked down as they were barely out of reach, while others moved forward - often without me.
My pain became worse and then eventually became impossible to have any semblance of a life. It wasn't until another doctor was denied by insurance to do an MRI and being awake for more than four hours a day was a miracle that you would do the scan. By that time, I was so bad that even you couldn't deny it.
That scan showed a lesion in my brain.
Even with this information, you still didn't want to take any action other than "watching it" . I disagreed. I found a neurosurgeon - without your help - and scheduled to have it removed. It's brain surgery; terrifying to go through at any age, but I'd rather die trying than to continue the miserable existence I had.
The lesion was benign; but was likely going to rupture within days of my surgery. Pressure on the blood vessels caused massive hemorrhaging and extreme swelling led to herniation and injuries. I had THREE LITERS of blood given to me so that I didn't bleed to death and vessels repaired in my brain. Swelling and herniation led to the tonsils of my cerebellum losing their blood supply and the tissue dying. My upper spinal cord was injured and shows a permanent "dent" .
My 21st birthday was not spent being goofy and tipsy, like most, but was spent in a medically induced coma. The coma lasted two weeks and I woke up unable to speak or move from the head down. The pain blew the 1-10 scale away, but I was forced to communicate this by blinking and mouthing words. Soon, a trach was placed so that I could stay on the ventilator without sedation. This was after I chewed my tongue so much that it wouldn't fit in my mouth and I'd stopped breathing twice. A feeding tube was placed, and I was in the middle of a tangle of cords, tubes, and catheters.
Me about 2 months after my second brain surgery after I left ICU. I had to wear sunglasses around bright lights and was swollen from the medications
I gradually regained movement and could speak with a speaking valve. Days were spent pushing myself to get better, as I refused to give up, and nights were full of pain and nightmares. Many of my friends were unable to visit me, terrified of the suffering they might see. I began to become more of a memory than a friend.
The next 18 months were spent in various inpatient care facilities. Some full of horrible people and conditions; I had no choice but to keep trying. I'd made it too far to quit now.
I hope your mistakes haunt you for the rest of your life and they accompany you to your grave. I know that your mistakes will come with me to my grave. You almost took a chance at survival away from me, but you cannot ever prevent me from living.
