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Adjusting to a New Life After Brain Surgery

, by Stu, Ependymoma survivor

Stu

Stu

Credit: NCI-CONNECT

Stu shares how the long-term physical impacts after brain surgery, including vision, balance and speech difficulties, have helped him appreciate the minutia of life and enjoy the world around him.

Emerging from my craniectomy in 2016, I found a new, but still familiar, me. I still had most of my senses and basic movements – hearing, sight, speaking, and walking – but now they were different and made life full of opportunities. 

The long-term damage from my brain tumor – a fourth ventricle subependymoma – includes several main challenges that define the new me. This includes double vision, balance issues and difficulty speaking and swallowing. But I choose not to focus on what I’ve lost or what isn’t the way it used to be. Instead, I focus on what is positive and interesting about any given moment each day.

Understanding My New Vision

The new me now has different visual experiences. The removal of my brain tumor left in its wake a rare type of double vision called alternating skewed deviation. With this type of diplopia or double vision, my two eyes are misaligned to different positions each time I blink or change focal depth or direction.

At age 60, the visual landscape I experience now doesn’t line up instantly with the brain and memory maps created over the decades. And with this ever-changing (if subtle) misalignment, my brain works overtime to sort and match current visual images with stored ones.

An alternative to double vision is to close one eye. This would sacrifice a small amount of depth of field, which is sometimes a good trade-off. But after brain surgery, I was left with a second eye-related anomaly: nystagmus, an eye tracking problem. Nystagmus affects my vision when things are moving nearby. When I’m in a store and people around me are moving, my eye will start jumping because it can’t settle on a single moving object. When this happens, my brain becomes tired very quickly. 

My new me vision doesn’t keep me from enjoying the passing of clouds in a blue sky, the crimson red of a blooming rosebush, or the beauty in the face of my wife, also my best friend and caregiver. If anything, since acquiring this new me, I’ve noticed more appreciation in the minutia of life and the world all around me.

Appreciating My New Balance Accommodations

My second new me adjustment is balance. I am especially wobbly navigating crowds, which has led to some surprising encounters with other people. I’m not sure who is more surprised when I veer toward people – them or me.

At least I haven’t actually knocked anyone over yet and that is what I focus on. I can still experience life instead of lamenting the loss of the more active person that I was a few short years ago.

I also carry a cane. I use it as a “third leg” for stability instead of leaning on it for every step. It works wonders to “part the waves” in a sea of humans if I hold it in front of me when I’m navigating a crowded airport, for example. People are more gracious and provide a wider space for me to walk, which encourages me to get around.

Building My New Speech

The third most challenging aspect of my new me is difficulty speaking and swallowing due to damage to the cranial nerves and centers that control my tongue. I’ve learned new ways to communicate.

It’s a two-edge sword, though. My speech challenge is perhaps my greatest frustration. I can’t keep up or integrate easily with conversations. In a way, this has helped me to slow down and use fewer words to express my thoughts and emotions. Most people would say this is a good thing for me and how I enjoy life now. (I’ll skip wondering if that’s a compliment or insult.)

Accessing Resources to Recover

I have used many helpful resources and specialists during my recovery, which is ongoing. This includes nutritionists, physio therapists, and speech therapists. As I improve, I progress to different types of therapists. I’ve seen a physical therapist with a background in vestibulo-cochlear problems and a licensed speech language pathologist who helps  with my tongue issues.

I use rehabilitation services in a nearby small town. I also have at home care because I live in a remote location. My home nurse visits twice monthly to help me adjust to new challenges and monitor changes. My local home care network has limited experience with brain tumor survivors. So, they seem happy to continue working with me even as I continue to improve.

My advice is to accept available help. Ask your medical team or local health organizations about programs available near you. And explore services your insurance provides, which could include learning and mobility devices.

Stu

The bottom line is I’m here with the ability to enjoy life every single day. Even when I have a follow-up medical or diagnostic procedure, I focus on something positive. It also took doctors three years to determine my diagnosis. During that time, I was deteriorating. The new me post brain surgery is a lot better than that.

My philosophy: Cherish every day and embrace the flowers among the thorns.

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