My Baclofen Pump Surgery for NMOSD: What to Expect

Deciding to place a baclofen pump in my body wasn’t an easy decision, but it was a necessary one. Due to the severe spasms I was experiencing, I had run out of options and had to move forward with this procedure. At this point, I was and still am looking for quality of life. The baclofen pump seemed like a dangerous but sure way to achieve this.

The night before surgery

It was the night of November 1, 2020, and I couldn't sleep. I was so nervous because I had never had major surgery before. I had so many thoughts about what could go wrong. I was also thinking about how I didn't officially have a health proxy assigned. My nerves were taking over, and mentally I wasn't ready for what was to come.

It was time to implant the baclofen pump

In the midst of the pandemic, with only one visitor allowed to accompany me, on November 2, 2020 at 7:00 am, hospital staff rolled me into the operating room to have the baclofen pump placed. The surgery was estimated to take about three hours. They implanted the hockey-puck-sized pump near my lower right abdomen, tucking it under my skin and sewing it directly into my muscle.

I have the scars to prove it

About 2 inches to the right of my belly button starts a 7-inch scar; the pocket for the pump. During the surgery, the doctors threaded a long, flexible catheter under my skin. It traveled from the right side of my waist, starting near my lower abdomen, and wrapped all the way to my lower right backside and into my spinal cord. A second, 3-inch scar on my lower back marks the exact spot where the catheter was placed into my spinal cord.

A brief moment of relief

The surgical team filled the pump with baclofen, so the device began delivering medication even before I woke from anesthesia. I remember waking up pain-free and super relaxed. The first person I saw was my husband, and I was so relieved. I felt fine lying down, but then I had to use the bathroom.

A horrible pain

As I was being helped to sit up for the first time after surgery to use the bathroom, I felt this horrible pain. It was an awful, painful crawling sensation coming from my lower back and exploding into my head. For a few seconds, I experienced horrible nausea, everything went dark, and I couldn’t open my eyes. My head felt like it was exploding, almost like my brain didn’t fit in my skull anymore. In under 5 seconds, I thought I was going to pass out from the pain.

Let's try this again

As soon as the nurses saw my reaction, they laid me back down flat in the bed, and then the pain and weird sensations disappeared. Everyone in the room calmed me down, and we tried again. This time, all of the pain came back, plus I started crying about how bad my head hurt.

I had to be catheterized in front of my husband

The nurses laid me back down immediately. My husband, in total shock, was speechless and couldn’t do anything but put his hand on my head, trying to soothe me. I had to pee and couldn’t get up, so a male nurse had to catheterize me to alleviate my bladder in front of my husband, and I was so embarrassed. Soon after, the doctors confirmed the cause of the agony: I was experiencing a spinal leak from the incision in my spinal cord.

I was totally alone

In the midst of the pandemic, visitors were not allowed, and hospitals were short-staffed due to the increasing number of people with COVID-19. The day of the surgery was the last day I saw my husband for almost a month, and the same went for my family. This was by far the worst and most lonely time of my life.

Follow along to read about my recovery & lonely hospital experience.