Kaitlyn Jenkins woke up in the ICU on December 3rd, 2024, intubated and restrained after undergoing craniocervical fusion surgery. She describes the experience as a “living nightmare” as she found herself handcuffed and unable to speak upon regaining consciousness.
Jenkins, a 21-year-old suffering from Chiari malformation type 1, craniocervical instability, and Ehlers-Danlos Syndrome, had been seeking treatment for her conditions for years. After finally finding a specialist in New York who recommended the surgery, she underwent the procedure without being fully informed of what to expect post-surgery.
Upon waking up, Jenkins felt trapped and panicked as she struggled to communicate due to being restrained and intubated. She used social media to advocate for better patient communication, especially for those in similar situations.
The use of soft restraints to prevent her from removing the ventilator added to Jenkins’ distress, making her feel helpless and like a prisoner in her own body. Despite eventually being liberated from the physical restraints, the emotional toll of the experience continued to affect her.
Jenkins emphasizes the need for improved communication methods for patients undergoing similar procedures, as the inability to express oneself during such vulnerable moments can exacerbate the already terrifying experience. She stresses that the recovery process involves not just physical healing but also mental and emotional well-being.
Jenkins also commented on the lack of communication before the surgery. She recalled how the anesthesiologist briefly mentioned the possibility of waking up with a ventilator in pre-op, but didn’t elaborate on the details. Having previously undergone two brain surgeries without needing a ventilator, Jenkins didn’t give it much thought, only to find herself unprepared for waking up restrained and unable to speak.
The ordeal has significantly shifted her perspective on surgical procedures. She emphasizes the importance of clear patient communication, especially for surgeries as life-changing as brain or spinal procedures. Jenkins shared her experience with PEOPLE, highlighting the need for better communication between medical staff and patients.
Following the surgery, Jenkins faced complications and additional health issues that caused setbacks in her recovery. These included osteolysis, nerve pain, and difficulty walking, making her rehabilitation slow and unpredictable. Despite spending six weeks in the hospital due to complications and enduring various challenges, Jenkins remains determined to keep progressing with the support of her family and boyfriend.
The physical and emotional toll of the experience has led Jenkins to advocate for transparent conversations between medical teams and patients, recognizing the significance of understanding the risks and potential consequences of surgery. She aims to use her journey to promote better patient communication in the medical field.
“She says that it is a measure of how strong you are and how much the people who love you are willing to fight for you.” Despite the fear and persistent challenges, Jenkins stays optimistic and resolute in her efforts to take charge of her health gradually.
