I’m going to describe a situation that almost every patient with hydrocephalus has experienced.
So many of us have been in this position, and heard these words.
Here’s the scenario: Things aren’t going well, your pain is elevated, sleep is interrupted, and life is on hold. After struggling for a while, you make an appointment with your neurosurgeon, hoping there is nothing wrong, but at the same time, you hope that there is an explanation —or better yet, a solution, for why you are so “off”.
You go to the appointment.
Maybe they do some imaging, maybe they don’t.
Maybe they talk about your medical history, and try to find a similar pattern, or maybe they just say things look different than before.
Maybe they acknowledge that you are struggling, but maybe they tell you that they think you’re actually doing ok.
And in this moment, in this scenario…. they decide not to do anything.
In this moment… It’s so hard to see things from the viewpoint of the provider, when you are the patient. As the patient, all you feel is the pain, the fatigue, and the anxiety. But from a clinical perspective, your neurosurgeon sees things differently. They see the whole picture, and they are weighing all the risks and rewards. And it can be frustrating, disheartening, and confusing.
It might make you second guess your decision to go to the doctor, or tell anyone that you are hurting. It might even make you question whether you have the right neurosurgeon. We’ve all been there.
So, this scenario happened to me this weekend. I’m about two months post-op from my last surgery, and only the people in my closest circle know truly how tough this summer was on me. Right now I am working hard to get my systems reset, and brain rested, and my nervous system settled down. We’ve adjusted my shunt setting several times since it was placed in June, but I just haven’t been able to hit that “happy spot” where my pain has evened out. It’s been exhausting, and disheartening at times. But on the other hand, I’m doing well. There are always things to be thankful for, and I always try to acknowledge the victories along with the frustrations. I returned to work only about 4-5 days after the last surgery, and have been able to consistently work ever since. I have pushed really hard to regain my physical strength. Even though my pain levels have been all over the board, I have also been able to maintain a certain level of normalcy - professionally and socially. And when I saw my neurosurgeon on Friday, he decided that we are just going to ride the waves for a little while - and see where we are at in a month.
I came home from the appointment, and was truly discouraged. It felt like all the work that I’ve put into healing just wasn’t enough to make me feel as good as I want to feel. It feels like he’s telling me “this is as good as it gets.” And at the same time, there was a sense of relief - that we are to the point that I am stable enough to not have to do anything drastic. So many mixed emotions bubbled to the surface, and I sat on the floor and cried for a long time. Months and months of fighting every day builds up, until all at once the dam breaks and I have to emotionally reset.
Why am I sharing this with you? Perhaps it’s because I want to be authentic about where I am right now. Maybe it’s because I have learned that it helps me to write about the things I go through, so later I can look back on this phase of healing, and see how far we’ve come. But most importantly, it’s because I know that if I have experienced these difficult days, and this painfully challenging appointment with my neurosurgeon, then chances are that there is someone else out there who is going through a very similar experience. And by sharing these difficult days, I am reaching out to those individuals - Please know you are not alone. We are not alone.
Stay in the arena.
My name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x29), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family.