Anxious woman lying in bed awake in the night with clocks, a baclofen pump, and clasped hands floating around her head

Still Experiencing Spasms: My Baclofen Pump Surgery Day

Last updated: May 2022

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.

I was so nervous

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 I was rolled into the operating room to have the baclofen pump placed. The surgery was estimated to take about three hours. The pump is about the size of a hockey puck, and it was placed near my lower right abdomen, under my skin and over my fat tissue, sewn 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, a long, flexible catheter was placed under my skin that went around the right side of my waist, starting to the right of my lower abdomen, all the way to my lower right backside and into my spinal cord. Another 3-inch scar exists on my lower back which is where the catheter was placed into my spinal cord.

The results were immediate

The baclofen medication was inserted into the pump and before I woke up from anesthesia I was already receiving the medication. 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 laying 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 intense, painful crawling sensation coming from my lower back and exploding into my head. For a few seconds I experience 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

Again, I was laid 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. It was determined that 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 climbing 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 time and most lonely time of my life.

Stay tuned for my lonely hospital experience.

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