Many patients die in the first hours or days following a brain stem or pontine stroke, often of pulmonary complications. Others are not diagnosed soon enough and die from the withdrawal of support. However, those who receive quality supportive care, get diagnosed, and learn to communicate may live for decades.
At least one study reports an 80 percent chance of living 10 years after a locked in syndrome diagnosis in those patients who get the right care and support to meet their needs. Younger patients tend to have better outcomes, but this is not always the case.
Long Waits for a Diagnosis Can Make Getting Care Difficult
Getting adequate care and support are crucial to survival and quality of life with locked in syndrome, but a lack of diagnosis or misdiagnosis often causes a delay. While this condition is rare and not often studied, at least one researcher found the patients in his study waited an average of more than two months for an accurate diagnosis.
That study, published in the medical journal Brain Injury in 2002, reported that study participants waited an average of 78.8 days for a diagnosis. In more than half the cases, a family member brought their loved one’s apparent awareness to the attention of doctors.
A faster diagnosis would mean quicker access to therapy and quality of life support, as well as communication devices. This could increase the chances of living after a locked in syndrome diagnosis.
Recovery of Motor Function Is Unlikely, But General Quality of Life is Relatively High
When it comes to locked in syndrome, there are outcomes across the board. Many people never recover the ability to breathe on their own, swallow, or move. Others learn to talk and walk with the help of a walker. Most fall in between, often breathing on their own and communicating using eye gaze devices or brain-computer interfaces.
Some motor recovery is possible, but only rarely is it significant enough to make a difference in the person’s level of care necessary or quality of life. Still, in general, patients with locked in syndrome report relatively high qualities of life. As the study published in The BMJ concludes, even those with severe impairments related to locked in syndrome rarely want to die.
Talk to a Brain Injury Accident Attorney About Your Loved One’s Case
If doctors diagnosed your loved one with locked in syndrome, the attorneys from Newsome Melton will review their case for free. We handle complex civil litigation and may be able to identify a party who is liable for your loved one’s condition. Your family may be eligible to file a lawsuit to try to recover compensation for their treatment, rehabilitation, and ongoing care, among other damages.
Call us today at 1-866-611-BASC for your free case evaluation. We may be able to pursue a payout in your loved one’s case.