I was at the Chick fil-A drive thru, waiting for our food. First came the bag with our wraps, then our drinks. She handed me my drink and it almost fell right through my hand. Me, the cashier, and my sister were a bit surprised. My sister asked me, “What just happened?” I told her a bit nervously, “Oh, I don’t know. My left hand has been feeling kind of weak lately.” She looked at me and said, “That’s weird, maybe you should get that checked out.” She popped a waffle fries in her mouth. I thought, maybe I should.
Within a week I visited my doctor and showed her my hand. She asked me if anything happened. I said I don’t know. There were a few days in Hong Kong where I had intense ache and strain along my neck and shoulder on my left side. My roommate in Hong Kong told me I fell pretty hard from my bed directly on the floor (I had just returned from another night out). But, I didn’t really notice anything else. She thought I was experiencing ulnar neuropathy. She referred me to a neurologist and a few physical therapy sessions.
It was really difficult to get an immediate appointment with a neurologist, so as I waited I went to physical therapy for my hand. I didn’t realize how weak my left hand was. My left pinky and ring finger were slightly bent. I couldn’t’ keep them straight or bring them together. My overall grip was astonishingly weaker compared to my right. I started doing the exercises, using therapy putty, and tools that required me to do pinching and gripping motions.
I would talk to the physical therapist and the aides. Talk about how they got into the field. It was a nice distraction.
I saw my neurologist. We did a series of tests during my visit. He asked me when it started, any events that could have resulted in my hand. I told him the same thing I told my physician. He ordered an MRI of my shoulder and neck.
I’ve never hand an MRI before. I never realized how small it is inside the machine. The space between you and the tunnel walls can make anyone feel claustrophobic. You have to do your best and keep still or risk having to endure the whole process again. Trust me, you don’t want to do that. When the machine started, the beeping was so loud, it goes through your earplugs. Sometimes I would hum to the beeping sound in order to block it out. The MRI was 45 minutes for my neck and shoulder.
My neurologist gave me a call not too long after letting me know he doesn’t find anything. The MRI is normal. It was the best news. To be safe, he ordered another MRI for my brain and spine.
The procedure takes the same amount of time. I feel confident that my results will be fine.
I am halfway through my physical therapy telling my therapist my results came back normal. I guess maybe physical therapy may be the only treatment. Which was nice, because I like going there.
Then, I remember it was a bright and sunny day. It was early afternoon. A bit windy. I remember the shadows of the palm tree leaves swaying against my white shutters in my bedroom.
I’m sitting with my dog, as I do. My phone goes off. It’s my neurologist. I was calm, nonchalant even.
The following conversation is not verbatim, but as honest as I remember.
“I just looked over your MRI results of your brain and spine. And unfortunately, It looks like the back of your brain, the cerebellum is sinking into the spinal cavity, which explains your dizziness and your hand. It’s called Chiari Malformation Type I. I’m also seeing, possibly syringomelia along your spine.”
My heart was racing, my eyes started swelling. I stuttered, barely keeping it together. I’m fighting to not have my voice shake. “Um…I’m sorry…CCChiari? How did I get that? Is that genetic? Is it from alcohol?”
“Yes, Chiari Malformation. It can be caused from severe trauma to the region. In your case, it most likely you were born with it, and were asymptomatic until now. There is no clear link between alcohol or drugs.”
“…Okay, so what do I have to do? Do I just have to get on some medication?” Thinking that it was a quick fix.
“No, unfortunately, the only possible treatment would be neurosurgery, brain surgery. I’m sorry.” He sounded sincere.
Have you ever had that moment where it felt like your surroundings became a bit blurry, like you had tunnel vision and you can’t hear anything? The tears rolled down my face so heavily. My stomach dropped. “Are you sure that is the only option?” I was still in denial.
“Yes, with your current symptoms, it is the only treatment for this condition.”
“Um…so, sorry. Can you tell me more about the surgery?”
“It is okay. I know that this is something we didn’t foresee and it is upsetting. It is a decompressive surgery where they will drill into your skull and remove some of it. I will refer you to a neurosurgeon, because it is out of my expertise and they will be able to answer all the questions you have. In the mean time, I am ordering you another set of MRI’s to see the severity for your lower and upper spine and brain. Okay?”
Literally in shock. “Okay…”
“Alright, I just placed the orders, you should expect a call soon. Again, I’m very sorry. If you need anything else just shoot me an email or give me a call.”
“Okay, thank you. Bye.”
I cannot describe it other than complete hysteria. I cried into my pillow, my body curled up. My sister came over asked me what’s wrong. I told her something is wrong with my brain and I have to get surgery.
I got a call moments later to schedule an MRI appointment. The receptionist could tell that I was crying and I was emotional. She asked me if I was ok, I said not really. Then she proceeds to tell me a story about her daughter. Her daughter got into a horrific car accident. Messed up her whole back. Was in the hospital for 2 months. And was in rehab for 6-8 months. They told her she could never have kids. Ten years later, she was working and had 2 kids. She told me I know it’s hard and it will be tough, but it will get better so stay positive and stay strong. There is hope. Her story comforted me a bit.
The worst part of it was telling me parents. I didn’t tell them for months that I was seeing a neurologist or going to physical therapy. Now that the situation turned more serious, I had to tell them. I called my dad. I started to get emotional because I felt like I let him down and that I disappointed him.
“Hey dad, so I just had some MRI’s done and the neurologist called me. Told me that my brain is sinking and that I need to have brain surgery.”
My dad was so calm. I don’t even know what was going through his head. “When did this all start?”
“Since April (it was now August), I didn’t want to tell you or mom because I didn’t think it was a big deal. But now there is something wrong… and um…I have an MRI scheduled for this afternoon.”
“Oh…well…why are you crying, Dahlia?” He said in a way to make me laugh.
“Because dad, I can’t deal with this. I can’t handle it.”
“Well, you have to be strong. Life is always going to have hard moments. I’m coming home. You are going to be okay.”
Sobbing through the phone, I barely muttered, “Okay, dad.”
I went to get my MRI that day. It took around 2 hours.
I was filled with so much sadness and anger. I just wanted to be left in my room, in the dark. But my mom saw me and told me to get up. Uh…I just felt so sorry for myself. Months ago, I was living my life. Exploring the world. Feeling like, like I was moving so fast, and enjoyed every second. But at that moment, it felt like the day was going and I was at a standstill.