Howard Falkinburg

It finally happened. On Tuesday, May 23, 2023, I did a road trip to the surgical center at Rush University hospital in Chicago with my cousin Terry and residential staff Jen. This was to test whether another medication would be effective in taming my specificity and tone.

Let me back up for those who may not have followed my caringbridge page these last few years. I’ve dealt with intense tone and spasticity for the past four years. An intrathecal pump was surgically placed next to my stomach February 2019. This pumped a muscle relaxing medication called baclofen into my spine through a catheter. Unfortunately, baclofen has had little to no effect on me. The spasticity and tone have been debilitating to my basic functioning. Dr. Yablon, an expert in the field of spasticity, has facilitated problem-solving methods such as various procedures. None of these helped.

After four years, MFB referred me to Dr. Lubenow who’s office is located in downtown Chicago Rush University. He agreed to do a second catheter to my spine injecting another medication, which will bypass the pump altogether

The intrathecal catheter is a minimally invasive procedure aimed at releasing the Prialt into the subarchnoid space of the spinal canal. Prialt is a non-narcotic pain reliever and we are hoping the secondary benefit of relieving spasms.

So we did a road trip to Chicago. We found out that Chicago has even bumpier roads than Michigan.

Amazingly, the surgical center did not have a portable hoyer lift. We did a stand and pivot transfer onto the gurney. They then rolled me into the surgery room, transferring me to the operating table. They rolled me on my left side and strapped me in place. The anesthesiologist injected localized pain medication in my back, which increased my tone. Next was is the insertion of the second catheter that delivered the pre-out into my spinal canal. It was done within 15 minutes.

I was then lifted off the gurney and plopped back into the wheelchair. By now, my tone was revving up to 8 on the scale to 10.

Dr. Lubenow said the Prialt should start working within two hours of the procedure with the peak effect by midnight. I may feel residual benefits in the next two days.

We stopped for steak dinners in Saint Joseph. We had departed at 7:30 AM and did not return till 9 PM. The trip was brutal on my body. Sitting in the back of the van in a wheelchair was not a pleasant experience. Rolling over bump it roads with my muscle tone for several hours makes it nearly unbearable.

My legs were spasming and the upper extremities contracted against my body like a bear hug. My hands ached because the fingers were so tight. I was beyond exhausted by the end of the trip.

There was no significant improvement in my Tone the two days after the procedure. By the third day, my muscles were tight as they have ever been. It was painful steering the wheelchair with my left arm.

Follow up with Dr. Lubenow is scheduled for June 7. We are sorting out whether this will be a video call or not. I don’t want a ride to Chicago just for a doctors appointment.

I’m not sure if the tightness is a residual effect from the trip. Physically, I feel awful. Emotionally it’s not much better. Depression and anxiety hit hard the day after. I felt prepared that the new medication may not work. Maybe I’m just this medical anomaly whose body is immune to muscle relaxing medications. 

What will be the long term effects on my body? And my mental well-being? I’m struggling not to feel hopeless.

I felt minimal benefits the next few days on my tone and spasticity. My mind periodically reverts to suicidal thoughts but these eventually pass. It does not help having only getting a few hours of sleep in each of the past couple of nights.

I will keep everyone updated on the June 7 appointment. Keep your fingers crossed for me and send me positive juju.