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Published March 3, 2020

THE VIEW FROM MY SEAT

Torn between pills, surgery

By Ernie Williamson / The Bulletin

Here is a medical dilemma for you.

Suppose you had a spinal cord disorder that has left you with muscle stiffness so severe that you are in a wheelchair. You have discomfort from below the ribs to your toes. You wake up each morning with leg cramps.

This muscle stiffness is caused by spasticity, a disruption in muscle movement patterns in which muscles contract all at once. The condition is found in people with brain or spinal cord damage.

Muscle movements normally are controlled by a complex system that allows some muscles to tighten while others relax. Damage to the nerves in the central nervous system disrupts the pattern.

You have tried almost everything to minimize spasticity’s effects: Muscle-relaxing pills that also cause fatigue; hours of physical therapy and stretching; a year’s worth of antibodies from the plasma of thousands of donors; and Botox injections to relax the muscles.
One thing you haven’t tried: An operation called intrathecal baclofen therapy (IBT) delivers medicine you now take orally directly into the spinal fluid using a baclofen pump.

The system consists of a pump and a catheter that brings the medication (baclofen) from the pump into the spinal fluid. The pump is a round metallic disc that is implanted under the skin of the abdomen.

The pump contains a battery, a reservoir for the medication and a microprocessor. The catheter is a thin flexible tube implanted under the skin. One end of the catheter is connected to the pump. The other end is inserted into the spine.

What are the advantages of IBT compared to taking baclofen orally?

IBT is more effective because the medicine is brought directly into contact with the damaged spinal cord.

IBT, in most cases, causes fewer side effects than oral baclofen because it doesn’t circulate throughout your entire body.

IBT is reversible. The pump can be removed.

But there are risks:

The pump system needs to be implanted in a 2 to 3-hour operation done under general anesthesia, leading to the usual surgery risks.
There is the risk of infection around the device.

A baclofen overdose (usually caused by human error) or baclofen withdrawal (caused by an interruption of the delivery by the pump) are both possible.

IBT is potent and, while reducing muscle stiffness, it also causes weakness.

IBT patients must go back to their doctor’s office for pump refills and medication adjustments every 1 to 3 months. At the end of the battery’s life span (usually 5 to 7 years), the system needs replacing.

Other factors to consider. You are about to turn 73 and, most importantly, the doctors tell you that the IBT should make you feel more comfortable but probably WILL NOT enable you to walk again.

So, the dilemma: Would you risk surgery with all its complications and required follow-ups in order to reduce the discomfort even though it won’t, in the end, allow you to walk again?

Welcome to my world.

As you may have guessed, I am describing my condition and the choice I have faced for the past eight years.

I have decided not to get the IBT. Many people with spasticity, including those with multiple sclerosis and stroke victims, have had successful IBT surgeries, but, to me, the risks outweigh the rewards.

I reluctantly did a trial in which baclofen was injected into my spine on a one-time basis. My legs felt better but became so weak I couldn’t move them without pulling them with my hands.

That’s the difficulty in dealing with spasticity. There always seems to be a Catch 22. You seemingly can’t have both strength and comfort. No matter the treatment, doctors and patients are always searching for the right balance.

In defense of the IBT, the dosage can be adjusted regularly to find the correct balance between comfort and strength. But at my age, I don’t want to spend the rest of my life worrying about whether a pump attached to my spine is working properly. And more trips to the doctor aren’t on my Bucket List.

But that doesn’t mean I don’t consider IBT every morning when my legs cramp, or every cold day when the muscles tighten even more, or every afternoon when the baclofen pill leaves me fatigued.

At this point, it’s better the devil I know.

But if they said that IBT would give me even the slightest chance of walking …

(Ernie Williamson welcomes reader input. Please contact Ernie at williamsonernie@gmail.com. Or, send letters in care of The Bulletin, PO Box 2426, Angleton, TX. 77516)