Howard Falkinburg

I discharged from Mary Free Bed on 11/12. It was supposed to be a simple surgery to replace the Baclofen pump. Instead of just an overnight stay it turned into a 2 1/2 week ordeal.

On11/5, Dr. Vandenberg refilled the Baclofen pump with just Baclofen. Insurance will not cover the prialt at this time because the PE nurse was unable to inject the medication into the pump because the incision site was too swollen for the needle to reach the side port, or the medication is injected. This condition is called seroma.

Seroma is one of the most common post surgical complications. It is the accumulation of fluid near the surgical incision site. My fluid buildup was just over half the size of a softball with the left part of my stomach protruding outward. It appeared that I had a baby alien growing inside of me waiting to pop out.

The spasticity and clonus has been quite intense as a result. Making sudden movements or being moved triggers intense spasms, particularly in my arms and legs.

I was assigned Jess Larson as my physical therapist and Morgan Koehler as my occupational therapist. I’ve worked with Jess each of the five times I’ve been admitted to MFB. Morgan was my nurse tech during my original stay at MFB.

During OT, we are working on a lot of stretching and functional skills such as self feeding and shaving. We also did some work on the arm bike.

In PT, we worked on weight-bearing exercises, stretching, stand and pivot transfers, and evaluating my wheelchair for updated parts and to be fitted for a new one.

I enjoy working with both. Jess knows my history so well and oozes with knowledge. Morgan is also familiar with me working as a nurse tech the first few times I was at MFB. She gave fresh perspectives of my treatment and was open to previous interventions that have been helpful. 

Because my pump is not properly dosed, I have experienced a lot of stiff muscle tone, spasms and clonus. 

So what is the difference between these three conditions? Let’s find out.

Spasms

This is a sudden, involuntary, and in my case a painful contraction of a group of muscles. These are extremely common for people with neurological disorders such as spinal cord injury.

Clonus

This is an abnormal reflex that produces a series of involuntary and repetitive muscle contractions and relaxations. For me, this appears as a continuous bouncing movement. At its worst, I will have “body quakes” where my limbs are shaking. It resembles a seizure. Lately, just being moved triggers my clonus it can last approximately a minute unless somebody puts pressure and a limb(s) to calm them.

Tone

This is a continuous tension or residual contraction of a muscle that is resistant to passive stretching. Normal muscle tone allows for freedom of movement. Hypotonic muscles are floppy and weak. Hypertonic muscles have abnormally high muscle tone. The muscles are very rigid. My muscles are hypertonic on steroids.

Why is this happening to me? I have reviewed this in a past blog and my caringbridge entries but I will do so again.

A Baclofen pump dispenses baclofen throughout the spine to help alleviate spasticity. A catheter attaches the Baclofen pump, which carries the medication to the spinal canal. Baclofen is a dense medication so it tends to flow down the spine and Prialt (an anti-pain medication) goes downward because it is lighter. Because of scar tissue from previous scoliosis back surgeries, there are pockets in my spinal column where the medication pools up and doesn’t flow throughout the spine. I’ve been quite rigid as a result.

There is oral Baclofen but I have had hallucinations and paranoia when it became toxic. We are titrating the oral baclofen down and eventually the pump. We will then replace the baclofen with prialt to lessen the intensity of my spasticity and clonus. But my recovery has been anything but following a rational plan.

Dr. Yablon paid me a visit while I was still at Mary Free Bed. He is leaving for Dallas in December for a new job and to care for his mother who was injured in a car accident. This is a gut punch for me. Dr. Yablon never gave up trying to solve the problem of my spasticity and muscle tone. He took it as a challenge and always gave me hope. He wants to keep in contact with me.

So what does the future look like regarding the spasticity?

Nothing on the horizon. There has been talk about having an intrathecal pump using two catheters for years. I’ve done research and there are studies being done but nothing regarding spasticity.

I’m discouraged but not giving up. I’ll give an update after getting a dosage of prialt on my status.