Sometimes I have this weird gift of forethought. Either that or just really good hunches. If I look back through my journals, there are multiple instances in which I predicted last year that I had a brain tumor. What are the chances, right? Yet, I turned out to be correct.
Later last year, as I prepared for my brain surgery, everyone was so excited because I was going to get “better.” The surgery would be a miraculous success and I’d feel loads better and I’d be able to go back to work 100% and magical unicorns and ponies.
But somehow, unexplainable to me, I knew better.
August 22, 2016: “I don’t know what to think about this surgery. The closer it gets, the more I’m filled with trepidation that things might go wrong, or that I’ll wind up with diabetes insipidus or worse headaches or something like that. I just don’t know what to expect, really. How do you recover from this kind of brain surgery? Will the dizziness and all that be gone, or is that a completely separate and unrelated problem? Could I be developing something like POTS? I haven’t really looked into it, to be honest; it just always seemed most likely that my head problems were due to the tumor in my head.”
August 23, 2016: “That’s not reality. That’s a fantasy. One that I don’t believe has a snowball’s chance in hell of coming true. I’m still going to have some problem after this surgery. I know it. Whether it’s diabetes insipidus or continued headaches (like most people report they still have) or whatever, there’s going to be a problem of some kind. I know it. With all that’s happened to me, I couldn’t possibly be that lucky with this surgery. Something bad is going to happen to me. I can sense it. This could debilitate me forever.”
August 24, 2016: “Am I really going to get better? Will removing the tumor really solve the problems I’m having or will it create new problems that are even worse? That’s my greatest fear, to be honest. That I’ll go through this difficult surgery only to end up with more problems. And then what do I do? Stay on disability? Until when? How am I supposed to handle a life with whatever other problems this surgery could cause? Just…what if?”
My brain surgery was on September 8, 2016. It went off without a hitch. No diabetes insipidus. I was discharged 48 hours post-op. My headaches finally went away six weeks post-op. And the best news: my follow-up MRI from two weeks ago showed no signs of reoccurrence! Which is absolutely fantastic news and is better than I was ever hoping for!
But…I’m not better. A few days before Christmas, I started developing dizziness, shortness of breath, and a rapid heart rate with little exertion. I had my suspicions of what was happening. I underwent extensive testing after the New Year, which confirmed a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS). My cardiologist thinks the likely cause of my POTS is prolonged anesthesia from the surgeries I had last year.
My days now consist of taking in roughly 4-5 liters of water and Gatorade, plus 5-7 grams of salt per day, in an attempt to regulate my blood volume so I don’t pass out when I stand up. After about 8-10 hours of doing this, I feel well enough to move around the house a little. I wear compression socks. I spend a good deal of my days propped up in bed because I can’t fully sit up or stand for too long. I can’t remember things very easily anymore because of brain fog (due to the relative lack of blood flow to my brain). I’m on long-term disability from work. I can’t walk long distances without the use of a wheelchair. In truth, I’m fairly debilitated.
And I’m not better.