​Body Spasms & Baclofen Pump

Posted by Amber Collie in Life After Paralysis on August 16, 2021 # Health, Lifestyle

Zack at the hospital It’s been over a decade fighting body spasms. Rapid body shakes at random times. After my son Zack was injured in a beach accident, becoming a quadriplegic, one of the many side effects was his overpowering body shakes. They could happen at any time. If you brushed up against him, his wheelchair hit a bump in the sidewalk, or even the movement driving in a car could set them off. At the beginning of his injury, we looked at these spasms as positive, muscles tightening and keeping his body from atrophy. Zack also learned how to initiate them in his hands so he could hold things for a minute. Most exciting was that he could bear weight on his legs and stand with help from a physical trainer. We didn’t want to give that up.

I was told about a baclofen pump back then, but it seemed so scary something inserted into Zack’s stomach. It was the size of a hockey puck, and the medication went directly into his spine. I didn’t do any research on the baclofen pump for years. Zack took the oral medicines daily, and it was not working that well. Over time though, these spasms just became annoying. I remember when he was crossing the street on his college campus; I was in the van waiting and saw him wheeling towards me. Suddenly, he went into a full-body spasm; his books, cell phone, water bottle all flew off his lap into the street. Cars stopped; the people who stopped did not know what to do. I started towards him to help. People did end up helping him, and we laugh at that scene now, but these spasms interfere with his daily life, especially when he started driving, safety became a big issue.

Zack after procedure

Getting his driver’s license was a huge accomplishment, but not driving radically curved his independence. Zack posted on social media his questions about the pump. To our surprise, lots of positive feedback outweighed the negative. After hearing many personal stories that helped change people’s lives for the better. Zack decided to go through with it. We did some more of our research and a couple of doctor consultations. We were scheduled for a trial test to see how his body would react to the procedure.

Zack ended up with a spinal leak and a massive headache. After returning to the hospital, it was fixed quickly with a blood patch, all of which we had no prior knowledge of before. I was not happy Zack had to suffer migraines, but it gave us experience and understanding for when the actual surgery happened. We checked insurance coverage for the whole process. Once that was set up, we set a date and waited. Everything went very smoothly. After surgery, the doctor found me in the waiting room and told me it couldn’t have gone any better. Good news for mom!

Zack moved to recovery and spent one night in the hospital for observation, possible side effects, and medication dose corrections. Being on the oral Baclofen, Zack was taking 40 mg 2 times a day. Now he is taking 10mmg, so much less medication! Also, taking the medication through the pump cuts out the side effects. We have been home for 5 days now and have been able to do 2 normal bowel programs and showers minus some constipation, probably from the anesthesia. His incisions, one on his stomach and one on his back, are healing up quickly and nicely. I was nervous about moving him at first, but we have navigated through that and have been extra careful with the lifts. Overall, in my opinion, this surgery has been a success. We see the benefits already. Zack has slept with motorcycle tie-downs on his legs, so they do not kick up through the night, because he is unable to get them back down once up. The last 2 nights Zack has slept through the night with no tie-downs. The first time in over 10 years!

Amber Collie bio: My life has had many parts, I could write a book just on that section but let's fast forward to when I married Adron Collie. Two weeks after turning 20 (yes, very young!) I had Zackery at age 22, Levi at 24, six years later Kaden, and 18 months after that daughter Laila, making me a busy mother of four. At that time, I also ran a photography business. The year Zack was injured I had a child in Preschool, Elementary, Jr. High and High School. Four kids in four schools! I thought I was so busy, just getting their drop off and pick up times correct was a challenge. I have to laugh now thinking back on that because little did I know my life was just about to turn upside down.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.