Submitted by Cathy Cuff-Coffman

This is an update of Cathy’s multi-part blog series, documenting her journey with a Baclofen pump implantation. You can read all previous installments here.

It’s Not A “Plug and Play” Device

Hello again. I’ve been living with my Medtronic’s intrathecal baclofen pump for three months now. The binder is off, and the pump is securely placed, jutting out next to my belly button.

It’s good that my bathing suit will help disguise my “Alien!”

Overall, I’m pleased that Dr. Michael Kryger and I decided that the pump is the best therapy for me. I have very “high tone,” or high spasms that cause my body to feel as if it’s locked in a suit of armor.

However, we are in the stage of adjusting the intrathecal baclofen strength and dosage rate. This requires frequent visits to Penn State Health Rehabilitation Hospital to visit Dr. Michael Kryger for the “uploads and updates.”

Dr. Kryger is exceptionally caring and responsive whenever I report “high tone.” We both anecdotally theorize that my increase in training brings on the high tone. The increase in training is what we want, so we’ve done the following:

  • Increased the flow rate of the baclofen several times. Last week’s increase was more aggressive than previous increases.
  • Increased the strength of the intrathecal baclofen. I’m not a chemist, so I say we went from “1.0 to 2.0.” Dr. Kryger finds the port on the pump reservoir, uses an aspiration needle to remove the “1.0,” and uses an injection needle to fill the pump with the stronger “2.0.”
  • As we go forward, Dre. Kryger and I have come to an understanding that my high tone case is unique. I visit him weekly. The latest dosing delivery is also unique. Dr. Kryger programmed the pump to deliver high doses of intrathecal baclofen every two hours. In between those bursts, the flow is steady. When I am exceptionally spastic, he has authorized me to take up to 10 mg of oral baclofen.

In July, he will switch out the baclofen to 3.0.

I’m still not driving, so I’m thankful my husband works from home and can make the 1:20 drive to Hershey. I am grateful we still have things to discuss as we approach 40 years of matrimony!

According to the Medtronic’s professional website,

“Adult Patients: The onset of action is generally one-half hour to one hour after an intrathecal bolus. Peak spasmolytic effect is seen at approximately four hours after dosing and effects may last four to eight hours. Onset, peak response, and duration of action may vary with individual patients depending on the dose and severity of symptoms.”

Despite the short-term aggravations, I have no regrets about getting the Baclofen pump. My pain level has dropped significantly, and I have a caring and responsive doctor.

Finally, Medtronic’s website offers transparency that gives research nerds like me an extra layer of confidence.

There’s still work to do, but there are no days off in our world!