a woman anxiously lies in a hospital bed

Post-Surgery: Bye-Bye Spasms?

Last updated: May 2022

Editor's note: In a previous article, Aldelly discussed having surgery to install a baclofen pump to help treat spasms. To read that article, please click here.

On November 2, 2020 at 8:09 pm my husband gave me a big kiss on my forehead and said I love you as a form of goodbye. It was the last time I would physically see him for some time.

Day 1

My first night at the hospital was a painful one. As the anesthesia in my body slowly faded, I felt so much pain in my lower abdomen and back. I was so uncomfortable and couldn’t even turn on my side or sit up due to the spinal leak I was experiencing. All I could do was lay down, only moving my neck from side to side and my arm to ring for a nurse.

Day 2

The governor of Massachusetts spoke on television because COVID-19 numbers were rising drastically, and the hospitals made an executive decision to not accept any visitors and to cancel all elective surgery. My heart sunk. This meant I would not be able to physically see my family. Still unable to sit due the spinal leak, I had to be catheterized every time I had to urinate. It was all so uncomfortable, embarrassing, and humiliating. I was still in a lot of pain from the actual surgery. My back was starting to bother me from lying flat, and my hair was becoming matted. When it came time to eat, I could hardly get a bite in because I wasn’t able to sit up; not even 5 degrees. The hospital was already short-staffed, and I hardly had help eating, often spilling the food on my chest and neck area. I was miserable and in a lot of pain. The night shift was even more short-staffed and even slower to attend to patients.

Day 3

There were still no visitors allowed, and I was still being catheterized every time I had to urinate which, by that point, had become painful. I still was not able to get up, and every time the doctors tried, I would get a painful headache accompanied by severe nausea, painful eye movement, and what seemed like a total vision blackout. I still couldn’t eat well because I was not able to sit up, and I was having severe nausea. I was already getting pain medication, baclofen medicine, plus a concentration of caffeine to help with the headaches. It was a horrible day.

Day 4

There were still no visitors allowed. I had a foley put in because the catheterization was too painful at this point. I still could not get up and was hardly eating. On this day it was decided that a blood patch would be the correct way to help ease the spinal leak and hopefully speed up my recovery. The original plan was to have this surgery to install the baclofen pump and go home; I never expected to have a spinal leak and stay. Out of desperation, I agreed to the blood patch and the whole experience was a blur. The procedure was done in 10 minutes, and I was praying the whole time. I laid back down after the blood patch procedure and was crying from the pain. It was actually a combination of pain from the spinal leak, sitting up, and the installation of the blood patch, not to mention I was getting very homesick.

Day 5

Still no visitors allowed. I was starting to lift the bed to a 20-degree angle, making it easier to actually eat and partially drink my coffee without spilling it on me. At this point, my hair was so matted I thought about how easy it would be to shave it off. Even though I FaceTimed with my family every day, I was so homesick and missed my family dearly. The headaches were still there as was the nausea, but not as bad, but it still was not tolerable. On this day, the doctors were trying to discharge me to a rehabilitation center because I hadn’t walked in 5 days, plus they wanted me to adjust to my new life with the pump. I refused because I still did not feel comfortable with the spinal leak and all its side effects.

Day 6

Still no visitors. I was able to sit up 40-50 degrees and eat. The only problem was that my nausea and headache persisted. On this day we found a rehab that would admit me in the midst of the pandemic. I felt so lonely. I had never been away from my kids and husband for this long. When news came that I would be transferred to a rehab center closer to home I was ecstatic! This was my sixth day of lying flat on my back, and I began to develop blisters on my back and butt area. I was miserable.

Day 7

I was transported by ambulance from the hospital to the rehab center, which was closer to home, and that made me happy. I still couldn’t sit, so I was transported by stretcher. On this day I realized I hadn’t taken a shower or moved my bowels in almost 8 days, which had never happened to me. The ride from the hospital to the rehab was bumpy, painful, and dizzying. When I arrived at the rehab, I immediately asked for visitation rights and they allowed me to see one person per day. I was so happy. I was still unable to sit up, so I had to have dinner almost lying down. I was given a new set of medication for pain, plus bowel movement remedies.

Day 8

It was 4 am and I started feeling a crazy rumbling in my stomach, and I knew I had to go to the bathroom, so I called and asked for help. If I thought the hospitals were short-staffed, this place was basically deserted. I waited over an hour and a half for assistance. This would be the first time I would sit up in 8 days, and I was petrified of the spinal leak effects. But nonetheless, my intestines were calling for a bathroom. When I sat up, nausea came back rapidly and my head hurt, but not as badly as the first day. There were three people assisting me and I really couldn’t stand on my legs. I was transferred to a wheelchair and then to the bathroom. About this bathroom experience I will only say that I thought I was giving anal birth to the Rocky Mountains without any medication or lube. It was the most horrendous experience I've gone through in my life thus far.

Later that day

I finally got to see my husband and I was so excited because he came with really good food, and loads of hugs and kisses. Although my kids weren’t allowed in, we were still FaceTiming 3-4 times a day. These were the longest, loneliest, mentally straining, hardest days of my life. The pandemic couldn’t have come at the worst time.

Stay tuned for more from my rehab experience

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Neuromyelitis-Optica.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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