16-year-old Jordan and her mother share their observations one month after Jordan received her first Perispinal Etanercept (PSE) treatment at the Institute of Neurological Recovery.
Born prematurely at 25 weeks and diagnosed with cerebral palsy, Jordan underwent over a decade of physical, occupational, and speech therapy. In this interview, she and her mother describe the changes in pain levels, limb mobility, and daily comfort experienced following the procedure.
Patient-Reported Changes Featured in This Video
- Significant Pain Reduction: Jordan reports living with daily, persistent pain (often rated up to a 10/10) for 16 years prior to treatment. Following the procedure, she describes a substantial reduction in overall physical pain, specifically noting the absence of pain when walking down the stairs each morning.
- Limb Lightweight Sensation & Movement: Jordan notes that both her arm and leg felt “lighter” post-treatment, making general movement easier and smoother.
- Speech Fluidity: The patient highlights noticeable improvements in her speech ease following the injection.
- Enhanced Quality of Life: Both Jordan and her mother express relief at finding an intervention that provided tangible comfort after years of being told that chronic discomfort was something she would simply have to live with.
Read Video Transcript
*Transcript generated by YouTube
Jordan was born at 25 weeks. Um she was a twin. Her brother didn’t make it but she was um diagnosed with cerebral palsy. She was in the NICU for 100 days and then started all that therapy and she was in therapy 10 plus years um you know OT, PT, speech. Um, we found out about this opportunity and she was very excited about it and she had her first injection about a month ago and we’ve seen great improvement with it. What are some things that you noticed? For one, I’ve been living with pain day in day out for 16 years. My pain was a 10 sometimes like every day and somewhere always hurt. I didn’t have a day without pain. And so to get something like this and notice all these differences like that is like what kind of difference beyond anything I’ve ever imagined. My arm was lighter, my leg was lighter, I can move better, my speech is better. Like I don’t have pain as much anymore, which I was really looking forward to that. One thing I noticed um every time she would come down from the morning, she’d come down the stairs and after the shot, she would say it it doesn’t hurt. She would like wait for it to hurt, but she every day she would say, “It still doesn’t hurt.” So that was an improvement I saw since the last shot. I was in tears when I got accepted. And even now after getting the first shot, I was beside myself. Like it’s something I can’t even put into words how grateful I am to have found something like this after going to doctors all the time and saying, “No, we can’t really do anything for you and you just have to live and to find this is like wow.” Fantastic.
