What Freed Me from the Prison of Spasticity

February 5, 2019

What Freed Me from the Prison of Spasticity

After my C6-7 spinal cord injury at age 16, I experienced severe muscle spasms. My legs would extend out straight or pull in so forcefully that the Velcro® strap behind my heels would break. I would kick off my shoes when my legs involuntarily shot out straight. My hands balled up in fists so tight that my finger nails left an impression on the palms of my hands

Muscle spasms occur from wayward messages firing in the spinal cord. At first, muscle spasms gives hope that something is “working.” A finger twitches, a leg jumps. That must be good, right?

Not necessarily.

Even though I was taking four oral medications several times a day, the spasticity continued. The medicine would make my eyes so heavy that I’d often doze off in class. I went to physical therapy to stretch out my muscles several times a week in addition to going to college full-time.

But nothing helped. I was in a prison of spasticity.

At Any Cost

At my wit’s end, I decided to speak with my doctor. I’d heard about something called an alcohol wash. I thought it would kill the nerves in my spinal cord. In reality this procedure is only a temporary relief to spasticity. But three years after my injury, I was ready to get rid of the spasticity at any cost.  

A New Option

Thankfully, my doctor had a better option. She introduced me to the Medtronic baclofen pump.

A research study was going on for this device that would deliver a tiny amount of baclofen (an anti-spasticity drug) into the spinal fluid. The pump would be implanted into the abdomen, while a catheter would run from the pump into the spinal fluid. Medicine would be directly administered to the spinal cord and prevent the spasms.

The Trial

Several weeks later I lay in a hospital bed speaking with a doctor as he prepared to give me a test dose of the baclofen through a spinal tap. About an hour after the medication had been placed in my spinal fluid, he moved each leg through a series of range of motion exercises, testing the effectiveness of the baclofen.

My legs had become flaccid. The doctor moved both legs without any resistance. It felt like a miracle.

The Surgery

With only a little hesitation and much hope, I had surgery with the same neurosurgeon who had performed my spinal fusion three years prior. For three long days, I had to lie flat on my back to allow healing of the surgical site. I had an excruciating spinal headache, but staying flat eased that pain a bit, too.  

The Resulting Freedom

It’s been almost 27 years since I first received the pump. Spasticity no longer controls my life. I was able to reduce and eventually eliminate all of my oral medication for muscle spasms. Finally, I could stay awake in class. I began driving knowing that muscle spasms – or taking too much medication – wouldn’t endanger my ability to drive. And I was able to increase my independence by safely transferring in and out of bed.

I have attempted to back off the medication to see if I no longer need it. Even after waiting 6 to 8 weeks at a lower dose (long enough to wait out any withdrawal side effects), my spasms were too strong to safely transfer and live alone. Once I bumped the baclofen back up, everything was good again.

What You Need to Know

  • Depending on the size of your pump and dosage, a medical professional will refill the pump every so often with a needle and syringe. I have a 20cc pump (40cc is the other option) and receive a fairly low dose. It is refilled about every 5 months.
  • Since the pump is powered by a battery, it is replaced periodically. Now the life expectancy is about 5 to 7 years. I’m on my fifth pump.
  • If you use your spasticity for mobility, the pump may not be a great option. I’ve seen and heard stories from walkers who learned how much they use their spasticity for mobility. The pump has had mixed results for them.   
  • Things can go wrong. I’ve experienced withdrawal three different times. It is not an experience I ever want to go through again. One must learn the early signs of withdrawal and overdose and get help immediately.
  • Finding the right dose can take some time. Too much medication can make you flaccid; too little won’t lessen your spasticity. Finding the “sweet spot” may take some time since the dose is typically increased or decreased 10% at a time for safety.
  • Because my spasms were so severe, I had retained some muscle mass in my legs after my injury. I prefer my legs flaccid, so I lost most of the muscle in my legs and experience more swelling in my ankles as a result of the lack of spasticity. For me, the trade off has been worth it.
  • People always want to know, “Can you see the pump sticking out?” Yes. And no. I have a thin build and without clothes I can see the pump. When dressed – even in tighter fitting clothes – no one knows my pump is there.
  • When traveling with a pump, have an ID card on you – just in case. I recommend calling Medtronic and finding the closest doctor to your destination. If you are traveling overseas, be aware there might not be a doctor in that country. Ask your doctor if you should carry oral baclofen with you in case of withdrawal (although this won’t completely prevent withdrawal).

The Medtronic baclofen pump has given me the ability to live my life. But it is not the answer for everyone. Talk with your doctor about options to relieve the spasticity that can suck the life out of you.

One Response

  1. All of this information is so helpful and seems like getting a pump is a no brainer if one suffers from spasticity!!!!

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A gifted athlete. An unthinkable accident. Will a wheelchair crush her adventurous spirit?

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Jenny Smith

Jenny Smith

After a spinal cord injury at 16, I discovered that a wheelchair could take me places I never dared to imagined.

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