Recovery from Baclofen Pump Surgery During a Pandemic
After going through surgery to install a Baclofen pump and all its complications in the middle of the pandemic, it was time for recovery. As a first-time user of the Baclofen pump, I was sent to a rehabilitation center to get stronger, to learn about the management of the medicine, and to learn my new ways of life. In my perfect world I thought I was walking by the time I woke up, but that’s not what happened.
Before the surgery, I was given a brief explanation of what my life would look like if I worked hard to build up my muscle strength. I was sold on the idea that I could have the opportunity to walk again if I worked hard, which is probably still true. I did my own brief research of what to expect and even connected to social media groups for support. I was sold on the idea that this Baclofen pump was a life safer and a miracle, and that may be true for some, but 2 years later, I can’t say the same.
The results haven't come yet
I worked my butt off to work out and get strong, and to some point, I did accomplish things like going up the stairs and stepping in and out of a car. I still, however, have not achieved the results I had hoped for. For me, this pump felt like a magical spell and I was its rag doll being tossed around.
I still can hardly walk
If I had too much Baclofen, I would be too weak and unable to walk or ambulate around my house, for that matter. If I had too little, I would feel withdrawal symptoms immediately. If I had some sort of cold or infection, the Baclofen wouldn't work at all because my immune system would take over my body and the spasms would return, even more severely than before. I knew I had a sniffle coming on when I started spasming again. It was a horrible feeling.
The pandemic made nothing easier
This all happened during the pandemic, and when I went back home, I had to quickly adjust to being a home school teacher to my 5-year-old who was entering kindergarten and my 9-year-old 4th grader. All of this was happening while trying to take care of the 9inch scar that was on the right side of my abdomen and my back, doing physical therapy at home, and doing my best to keep my kids sane, entertained, and safe.
It was a very emotional time
I cried a lot; the pain and the adjustments to the Baclofen pump were a lot to deal with. The pandemic hit my family hard emotionally, like the rest of the world, but being newly operated on and trying to keep up with the kids was very challenging.
For a while, I found myself in a place where I felt stuck for many reasons. First, I was not emotionally prepared for the changes to my mental state that was to come during this time, especially during a pandemic. It's almost like I was given a brand new pair of legs, but they were wiggly and not at all stable. I knew some of this was inevitable, but to actually experience it was surreal.
In hindsight, I learned a lot
The recovery took some time because I would get slight flares in between days that made my NMO act up. But I had to figure it out the hard way by going to weekly appointments to adjust the Baclofen dosage and talking to my pain management doctor about ever-changing plans with the hope that this would work. It was definitely a learning journey that I was not ready for.
How long has it been since your initial NMO diagnosis?