Locked in syndrome is a rare complication of brain stem injury, brain injury, stroke, or poisoning. It leaves the person unable to move or communicate, although most people can move their eyes laterally. While motor function is dramatically affected and most people do not recover any movement following a locked in syndrome diagnosis, he or she remains cognitively intact.
Causes of Locked In Syndrome
Almost any type of illness or brain injury that can affect the brain stem may lead to locked in syndrome or a similar condition. Locked in syndrome requires further research to nail down exactly why this rare complication occurs in some cases but not in many others.
Some of the known possible causes of this condition include:
- Traumatic brain injuries
- Brain stem injuries, including from a stroke, accident, lesion or tumor, or hemorrhage affecting blood flow to the brain stem
- Poisoning, especially when the poison cannot cross the blood-brain barrier
- Snake bites with neurotoxic venom
- Severe conditions involving the circulatory system
- Damage to nerve cells and/or the myelin sheath including osmotic demyelination syndrome
Locked in syndrome likely occurs more commonly than current research reflects. The true prevalence is unknown, and this makes it difficult to pin down the most common causes.
Living With Locked In Syndrome
Locked in syndrome occurs when someone suffers an illness or injury that dramatically affects their motor function, leaving them quadriplegic and unable to communicate verbally, but does not affect their cognitive function. They retain awareness and brain activity.
Quality of life is a major concern for those with locked in syndrome, but with the help of technology they can continue to experience the outside world and communicate with family members. Communicating using eye signals, eye gaze devices, or a brain-computer interface is possible for some people, and customized power wheelchairs mean those with locked in syndrome are no longer bed-bound.
Treating Locked In Syndrome
There is no standard treatment for helping people overcome the obstacles posed by locked in syndrome. Most people with locked in syndrome do not recover a significant amount of motor function and most never move their limbs or trunk again. Treatment, once doctors confirm a diagnosis using neurological testing and electroencephalography (EEG), generally focuses on addressing immediate symptoms and preventing additional injuries or illness.
Bed sores and pneumonia are just two concerns for those with locked in syndrome. Preventing this type of secondary infection can be key to a long life and keeping the quality of life high.
Prognosis and Recovery from Locked In Syndrome
While there is little hope for a recovery from locked in syndrome, there are many options that can help the patient and their family live a longer, more fulfilling life. Having access to the right assistive equipment can allow families to keep their loved ones at home. This includes:
- Lift systems
- Special hospital beds
- Customized power wheelchairs
- Ventilators and other respiratory aids
- Communication devices
While those with locked in syndrome will always require ongoing care, family members may be able to provide most care. Having regular in-home nursing care will cover the remaining tasks, and placement in a long-term care facility may not be necessary.
With improvements in technology, quality of life should continue to improve for these patients in the future. While eye gaze devices and brain-computer interfaces already allow for communication, advances in these technologies could make it even easier.
Pursuing Compensation After a Locked In Syndrome Diagnosis
A locked in syndrome diagnosis may support legal action in some cases. A medical malpractice or personal injury claim or lawsuit could allow you to recover compensation to cover your losses and expenses and help cover your loved one’s ongoing care costs. You may have a civil case for compensation if:
- Your loved one suffered injuries that led to locked in syndrome in a negligence accident; or
- Your loved one suffered locked in syndrome because of delayed diagnosis or treatment; or
- Locked in syndrome occurred following a medical or surgical error
Let the Newsome | Melton team review your loved one’s case for free. We can help you understand your eligibility, rights, and legal options. If you qualify to pursue compensation, you may be able to recover a payout based on your expenses, losses, and other damages. This could include:
- Medical treatment
- Ongoing and future care costs
- Lost wages
- Diminished earning capacity
- Out-of-pocket costs
- Pain and suffering
- Mental anguish