On February 3, 2016 my world forever changed. I had brain surgery because I was diagnosed with hydrocephalus.
I do not talk about my diagnoses much because I don’t want it to to define who I am, but recently I feel as though many could relate to what I am going through, and I don’t want people to feel alone.
I started a new job last week, one that I have absolutely fallen in love with; however, it is hard work and for the first time in two years, I have to drive into an office and work eight straight hours. At my previous job, I could work from home almost every day and work at all hours of the day; just as long as the work got done. It was my second day at my new job, and I got into my car and just started bawling. I cried the entire one hour and thirty minutes it took to get home. I was not crying because I didn’t like my job, or because traffic was terrible (which it was), I was crying because I had a terrible headache and I had this headache all day.
I remember when I first started having these terrible headaches. I had just started at Thomson Reuters; I was sitting at my desk, and I said to myself “I think I am going to to go to the Urgency Room and see what’s going on”. I left work, went to the Urgency Room…and, well…this is where everything started.
The doctor advised that it would be best to get a CT scan and I was so embarrassed because I did not think it was necessary. By the time I was done with the scan my mom had arrived and we were just sitting in the room waiting for the results. The doctor came in and grabbed a chair and I knew something was wrong. If nothing was wrong why would he get comfortable? He said that the CT scan results came back abnormal, and then I just looked at my mom, and she looked at me, and then everything in the world just sort of stopped moving; the only thing I could hear was the beating of my own heart. Then I heard him say tumor and I snapped back to and I said “what…what did you just say”? He said, “You need an MRI ASAP, because we are unsure what your results indicate; it might be a tumor, but at this point, we are unsure.” A part of me just wanted to start laughing, a part of me just wanted to cry and a part of me just wanted to crawl into a black hole and not come out.
I went and got an MRI the next day and during the MRI they stopped midway through, pulled me out and said, “have you had any recent head trauma? Your brain ventricles are very large.” NO, GOD DAMMIT! At this point I was sick of people telling me things that were not an absolute, you know? The MRI results showed that I had enlarged brain ventricles which indicated that I probably had a condition known as Hydrocephalus.
The next day I got a phone call from my doctor and they told me to go to the hospital and have a spinal tap performed. So, that’s what I did, and when the spinal tap was being performed, the ER doctor tapped my spinal column….ohhh about five times and missed. I went to radiology for the sixth and final attempt at a spinal tap, and after the fluid was released, I had relief of my headache. It was at that point that the doctors knew I had hydrocephalus. However, since my spine had been stabbed so many times, the next day I had a spinal tap headache. I then had to go back to the ER and get a spinal patch.
I was diagnosed with Normal Pressure Hydrocephalus. At first I was like, okay…so what medication can I take? Just give me whatever I need and I will be on my way. Nope; that’s not how this monster works.
- Hydrocephalus is treatable it is NOT curable
- Hydrocephalus is only treatable through BRAIN surgery (only 30% are the patient’s first surgery to treat hydrocephalus)
I met with my neurosurgeon and he reviewed all my scans, and basically my entire life history, and when we sat and looked at my brain together, he turned to me and said, you need brain surgery; you need the surgery so we can insert this shunt and allow CSF to flow freely again. Your brain is pushing against your skull, and your ventricles are very enlarged. If you don’t have surgery things will get much worse, very soon. Then he threw in…I will also be shaving half your head.
So, there I was. Sitting in this office with my dad and my neurosurgeon; they only thing I could fucking think about was this guy shaving half my head!
I was scared, shit man, I still am scared. After that meeting I drove home by myself, and I thought about death, and how my life was going to change. I don’t think anyone really knows that feeling unless you have been put in that position to feel that feeling. I was at my most vulnerable, but I was okay because I knew that up until that moment I had lived a great life and I was loved. You know, I knew what it meant to be truly grateful.
The day of surgery I tried to remain calm because I knew if I was freaking out then it was just going to create chaos around me. In my head I was thinking…today someone is cutting into my brain, MY BRAIN!, they are inserting a foreign object and I have to live with this shunt for the rest of my life. They took me back and I was so nervous and they gave me happy meds…and then I was out. I woke up, and I remember asking for dilaudid. I was alive…I made it.
I spent four days in neuro ICU and my family was always there. That’s really all I remember. My family…and my hair missing. Let me tell you something, my family are some of the strongest people I know. Yes, hydrocephalus impacts me and I stress out everyday from the impacts of it, but my family stresses out, too, but they do not give up on me, some have and that’s their choice, but my true family has never left my side. I love all of you, more than you will ever know.
It’s coming up on my two year anniversary of my first brain surgery. This has been the hardest two years of my fucking life. I still have headaches. I have headaches when it’s cold, warm, sunny; when it rains, snows; when it’s humid, when it’s perfect outside. I have a headache right now. I am scared that when I have a bad headache it means that my shunt isn’t working, and I will have to have another brain surgery to fix the issue. I am scared that no one will ever love me again because my brain parts are broken. I am scared that I will die on the operating room table if I have another brain surgery. I am sick of doctors and doctors appointments.
I hope for a cure for this condition. I hope for a cure for all illnesses; no one should suffer, but if you are, know that you’re not alone and know that you are fucking valuable.