SAM WOLFGRAM - STRATFORD, ON
*Sam Wolfgram
Early 2019 was great for me, I was doing well in school, I was dancing 10 hours a week, and I felt like I could do anything. I went to Universal Studios over March Break, and I competed in a few dance competitions. My life then changed in a way that was unpredictable, seemingly unstoppable, and really unfair.
Sunday, March 24, 2019 was the end of a dance competition weekend, and that was when I suddenly started to feel awful.
Monday morning I woke up and my head hurt, my nose was runny, and I felt sick.
Later on that week I still felt the same, I didn’t go to school and went through five tissue boxes because my nose wouldn’t stop running.
On Friday the doctor said that it wasn't anything to worry about, as lots of other people had also gotten sick at the dance competition. The following week my head still hurt, I still felt awful, but my nose stopped dripping. We went to my family doctor, and she thought that it would pass soon but did some blood tests to be safe. They were all normal.
I couldn't go to school because my head hurt, I couldn’t think right, and I was very tired. A few weeks later my vision went blurry so I was sent to a pediatrician. She was baffled at the situation, and started talking to other doctors. I had more blood tests, a CT scan, and two MRIs, and nothing was out of the ordinary except for low vitamin B12 levels. A month passed and the symptoms became clear: my head hurt like crazy, I couldn’t think properly, and I got lightheaded when I stood up, but I felt a bit better when I was lying down. I went back to the pediatrician who had been talking with other local doctors. She gave me a tentative diagnosis of POTS.
POTS, or postural orthostatic tachycardia syndrome, is a syndrome that causes the heart to race when a person goes from a reclined position to standing, and it affects blood flow to the brain. Basically it made me lightheaded whenever I was sitting or standing up. Some symptoms fit, except that I had more symptoms that did not fit. My mom did a lot of research, and she learned about cerebrospinal fluid (CSF) leaks. Spinal CSF leaks fit perfectly with my situation because they cause symptoms a lot like POTS. A spinal CSF leak is a hole in the connective tissue that surrounds the spinal cord and contains the spinal and brain fluid. The leak allows this fluid to constantly drain away. It decreases the pressure in the brain, making the brain not work properly, and causes extreme head pain. The spinal CSF leak had probably been caused by riding roller coasters, mixed with weak connective tissue, and a growth spurt.
As time went on, my symptoms continued to develop. In April, I started to get insomnia, and had periods where I would lose control of some muscles, and they would spasm out of control. We called this tremoring.
In May we had more doctor’s appointments, more blood tests, and my mom continued to research. Tremoring occurred almost every day, making life even harder. Appointments were booked in Kitchener and London, for neurology and cardiology.
My vision worsened so I visited the optometrist. After one appointment I was super dizzy, and I felt as if my head would explode. Then my head started to shake violently because my back and neck muscles were tremoring. I used my hands to control my head until I was too tired and had to get my mom to hold it still for me. My mom sent a video to my doctor, and we were sent to the emergency room of the Children’s Hospital in London.
My mom showed the doctor the videos, told him about everything that had happened, and his response was awful. He didn’t listen. He called me a liar. He said my mom was making my problems worse. He didn’t believe my pain was real. My mom convinced him to give me IV fluids. That helped me feel a bit better and stopped my tremors for several weeks. We left angry. This started a bad trend with lots of our doctors.
I continued to struggle to do anything. My day consisted of eating, listening to podcasts, sleeping, and laying down for up to 23 hours of the day. I rarely got outside, and I was on tons of different medications. Some were to retain fluids which helped increase the pressure in my brain, which lessened the symptoms so I did not get as lightheaded. Some were to help my brain function better and to improve my mood. Some were to help lessen the pain, but none of those ones worked.
I couldn’t look at screens, I couldn’t read, or write. I had gotten so weak I couldn’t lift a water jug, and walking up a flight of stairs made me lose my breath. I had some dark days over the summer, as I could not see what kind of a future I would be able to have as long as I felt like this.
The new school year started and I tried, but I couldn’t go. My symptoms had continued to develop, I started hallucinating, my balance was off, and my reactions were out of control to the point that sudden sounds, or fast movements, could knock me over. My insomnia was so bad my sister would go to school before I fell asleep.
Finally after six months, my specialist appointments started. The most exciting was an appointment with a neurologist at Sick Kids Hospital in Toronto. Sick Kids was exciting because it is the top hospital for kids in Canada with rare illnesses. My hopes were high, although there was a small sense of fear because of our previous experience with the doctor in London. Driving to Toronto was painful, car rides made me feel worse, and Toronto was a two hour drive.
My mom and I were called into the office and went through my history with the resident. My hopes were even higher now because he was very thorough and interested. We spent two hours talking and showing videos. When we were finally done, he left to go get the neurologist. We waited for around an hour. Then he walked in. He started asking me questions, and did a neuro exam. He took me out to the hallway and told me to run, but I couldn’t, then we went to a stairwell and he told me to jump off a stair, and I couldn’t. He was getting mad at me as he was saying that I just needed to jump, even though I couldn't. I got worried, he wasn’t listening to anything that I said. He had already made up his mind that there wasn’t anything wrong, before he even saw me.
We went back to the office and he said that nothing was wrong except what he could not explain. He said that he thought it was all in my head and I needed to see a psychologist. I was mad and feeling hopeless again. My mom tried to talk to him about spinal CSF leaks. He didn’t listen, probably because we were not doctors, even though my mom is a veterinarian, and all the information that we had was from studies from CSF Leak clinics including the one at Stanford University. He had all the information in front of him but he wouldn’t listen. He turned and left without caring, to let me suffer for what could have been years. By the end of the day my head was throbbing like a metal baseball bat had been smashing down on it all day.
This loss was devastating, this was a low point. My hope was burning out. We still went to other cardiologists, neurosurgeons, and neurologists, but we got nowhere because they did not know about Spinal CSF leaks.
My life didn’t change for months, through October, November, and right to December. On December 1st, my family doctor finally found a doctor to help me. We were thrilled. What made this new doctor different was that he had talked to my local team of doctors and agreed that a spinal CSF leak was possible, and that he was willing to try to fix the leak. My mom had known how to fix my problem since she had discovered the information about CSF Leaks back in May. This is what made all the rejections so aggravating, they wanted proof of a leak but the only way to get proof was to try to fix the leak. All I needed was an epidural blood patch, and if it worked, not only would it prove I had a leak, but it would make me feel better.
On December 9th, my mom and I went to the Stratford General Hospital. We met the doctor who was going to fix my leak. The procedure took five minutes, and I instantly felt better.
The epidural blood patch was just taking blood from my arm and putting it into the epidural space around my spinal column to plug the hole. I was so relieved that it worked. The feeling was unreal, my head felt empty, and I could not believe it. I waited for a few hours before I left the hospital to give the patch the best chance to work. Moving around was strange, but comforting. Driving home wasn’t painful, and I couldn’t stop smiling.
I spent two months recovering. I wasn’t allowed to bend over, twist my back, or lift anything over ten pounds. I slowly gained all my abilities back such as walking, jumping, and running. I spent Christmas feeling great. I had started getting back to a normal life. There are still things that I couldn’t do, such as dance, but I finally started back to school, and I loved school.
Even though I had spent 9 months feeling like I was constantly being hit with a baseball bat, I was very lucky. Spinal CSF Leaks are rarely diagnosed. Most people see a series of doctors, and wait around months if not years before getting diagnosed, and some of them suffer for years without hope for proper diagnosis or treatment. Since CSF leaks are extremely hard to see on imaging - even the most powerful MRI can miss them. Many patients are not believed by the doctors. Lots of people can’t work while leaking. Having been through a CSF leak, I am considered lucky to have gotten through it quickly without huge life altering consequences.
On March 24, 2019, my life changed, physically and mentally. This experience changed my perspective of life. I no longer take life for granted, I now know that life is unpredictable, but not to give up when bad things happen. Even though I was pushed down when I tried to fight, I didn’t stop. I have realized that even at the most hopeless of times, that it is still important to stand up for yourself and fight.