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It IS Brain Surgery: Part II – A Patient Perspective

Published on May 24, 2017 in Brain Tumor Information, In the Community

In Part I of this expert series on neurosurgery (brain surgery) we discussed the purpose of this series, and heard from a neurosurgeon about the basics of brain tumor surgery. Today, we hear from a patient that has experience how difficult this experience can be, but how the challenges can be overcome.

It was during her spring break in 2014, when Lisa Cohen, a 23-years old student, scheduled an appointment with an Ear, Nose, and Throat (ENT) specialists because of lingering vertigo-like symptoms. At the time, she had just started her first semester of graduate school, hours away from her family and hometown in Western New York.

Yet, she was truly cherishing an invigorating new beginning, having just moved into an apartment that was, for the first time in her life, completely “her own;” was working for a new college radio station; and hoping to earn an M.A. in English. It was an exciting time with endless potential and opportunities before her.

The one possibility that she never imagined, however, was that the ENT testing would lead to a recommended MRI, which would lead to the identification of a mass the size of a walnut on her cerebellum, which would eventually be diagnosed as pilocytic astrocytoma – a brain tumor. A brain tumor!

The following is a lightly edited first-person narrative with Lisa about her experience after diagnosis, prior to surgery, and her life after surgery:

[After the mass was found on the MRI] I met with two different neurosurgeons.

The first hadn’t personally performed many surgeries, and simply mentioned needing a shunt.

STOCK: Brain scans

A second opinion with a very well-known and experienced surgeon, was the first time someone called it for what it was: a tumor. He told me not to go online, not to research or look at pictures; that it would only scare me. He told me I should be in the hospital for only 3-4 days and I would return to graduate school in the fall.

I had no idea that this was only the best case scenario, and was not to be my experience.

I felt detached for a long time; that it all was happening to someone else and not me (I still do feel like that sometimes). I focused all my energy on packing up my apartment, moving home and finishing the semester of graduate school online. I was taking four classes and convinced my professors to let me complete extra assignments and attend class virtually via webcam. I was comforted, I guess, to believe brain surgery was not as scary as it sounded.

Then on May 20, 2014, I had brain surgery at a hospital in Connecticut.

Because my surgery was in a different state, my family and I spent the day before driving into town and staying at a nearby hotel. I remember we ordered pizza and my dad cooked popcorn, but I didn’t feel like eating a thing. I woke up the next morning at 5 AM and we took a taxi to the hospital. After checking-in, we walked down the hallway as a nurse lead us to the preparation rooms.

The closer we got to the curtains the further behind I walked, until it was just me, standing there, crying.

Attribution: Lisa Cohen

The procedure took several hours, and I had been told upon waking up that I wouldn’t feel a thing. But I did. It was the most intense pain I have ever had and it lasted for my entire nine-day hospital stay and beyond. I woke up to extreme headaches, sensitivity to sound and light. I woke up with ataxia (loss of control of bodily movements) on my entire left side and extreme double-vision. I had to relearn how to eat, walk, talk and do everything. I woke up and wanted to go home, but I could barely function.

Following surgery, the hospital provided basic, simple physical therapy (PT). They had me walk around the hospital, but I was too afraid to do stairs.

After I left the hospital, I had to continue PT as well as begin occupational therapy (OT) as” home care.” These helped me learn to use a walker, re-learn to feed myself, and better utilize my left hand in the face of the ataxia.

Lisa hiking the Appalachian Trail to raise money and awareness about brain tumors

After a few months my recovery was slow, so I checked into an inpatient rehabilitation hospital called Helen Hayes. I lived on the stroke ward for a few weeks, because the brain injury unit was not the best fit for my health. There I had PT, OT and now speech therapy (ST) twice-a-day every single day. After my inpatient stay there, I moved, once again, to outpatient care. More PT, OT, ST, Vestibular and vision therapy a few times every week.

In PT, I worked on gaining strength in movements and working on my gait while walking. In Vestibular therapy, I worked on eye & head movements, while walking and preforming tasks. In OT, I did fine motor skills with my ataxia-impacted left hand – moving lentils into a cup, working on an arm bike, ect. In ST, I worked on my breathing and voice (it still does shake and waver at times). In Vision therapy, I practiced with hart charts, using both eyes for tracking and reading.

This month is my three-year “craniversary,” three years since my surgery. And, while I have made some significant strides, today I still contend with constant double vision, ataxia on my entire left side, nystagmus and tinnitus (along with a sensitivity to sound). The brain is unique, as is healing. I may never recover, doctors cannot say, all I know is I want to live now. And I am.

I’ve been able to carry on with my life: I’m only a few courses away from achieving an MFA in Writing; I love to read, write, and hike; I won’t let any difficulty stop me, I just alter how I do things. I usually only type with my good hand, prop a book open with the right, and hike with trekking poles to help my balance.

I was always a hiker. I was raised near the Appalachian Trail. During my undergraduate degree I worked on a rock wall and minored in Wilderness Education. Having brain surgery and a brain tumor didn’t stop me from having dreams and making them into goals. Over a year ago I started planning this trip (2,190.3 miles from Georgia to Maine) and here I am now near Harpers Ferry, WV, over 1,000 miles into my journey. I have light weight gear and the best trekking poles (to help compromise for my unbalance). [To prepare] I hiked frequently around New York and worked out nightly with my pack weight at the gym. Thru-hiking may sound daunting, but I can’t imagine being anywhere else; doing this is exactly right. My ‘tramily’ (trail family) has already told me I now look people in the eye, I walk stronger and my voice is there. I’m gaining confidence and strength. I’m also sharing my story along the way and I wouldn’t change a thing.

* * *

I was 23 when a MRI discovered I had a tumor, about the size of a walnut, on my cerebellum. I had brain surgery in 2014 and it was successfully removed, but my life will never be the same. I will never be the same. I have struggled through PT, OT, ST, Vestibular and Vision Therapy and briefly lived in an inpatient rehabilitation hospital. Since my surgery, I have been living with physical difficulties of double vision and ataxia while fighting to raise awareness & support for those with brain injuries.

I have decided on an ultimate walk of thru-hiking the entire Appalachian Trail from Georgia to Maine starting March 1, 2017. (The trail miles this year are 2,190 and I hope to raise at least one dollar for every mile of the trail). I aim to raise awareness on my walk; often a brain [tumor] is considered invisible, but we should not be.

Attribution: Lisa Cohen

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