Some patients with a locked in syndrome diagnosis report retaining a sense of touch.
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Some patients with locked-in syndrome retain a sense of touch despite their global paralysis and inability to communicate verbally. Others, however, lose all sensory function in their torso and lower body. In incomplete injuries, patients may experience sensory losses on only half their body or otherwise retain only a partial sense of touch.
When a patient retains a sense of touch, they may also experience other problems related to sensory functioning. This could include pain, burning, tingling, or even itching they cannot scratch.
Sense of Touch Can Be Difficult to Observe in Patients with Locked-In Syndrome
It can be difficult to observe and document a sense of touch in those with locked-in syndrome. This is because these observations rely on detailed feedback from the patient, and those with locked-in syndrome often cannot communicate beyond yes or no answers in the early days of this rare medical issue.
Documentation of sense of touch is not always available as a part of other studies, which are usually more concerned about recovering communication, body control, and movement. Some survivors explain they do have a full sense of touch while others say they cannot feel anything following a locked in diagnosis.
Understanding Why Locked In Syndrome Occurs and Why Patients’ Symptoms Differ
Locked in syndrome can occur because of a stroke, hemorrhage, or traumatic brain injury that causes damage to the pons and/or the brain stem. This results in the quadriplegia and inability to communicate verbally that are the diagnostic criteria for the condition. Those with this condition remain cognitively aware and intact.
Like other effects of locked-in syndrome, a patient’s sense of touch is greatly affected by the degree of damage done to the pons and/or the brain stem. In a complete or total injury, they are unlikely to retain a sense of touch and have less of a chance of meaningful recovery.
When injuries are incomplete, however, they may retain some or all of their sense of touch. Like other types of strokes, a brain stem stroke can affect only one side of the body or the other or can result in other types of tactile dysfunction.
Treatment and Ongoing Care for Patients with Locked-In Syndrome
There is no gold standard for treating patients with a locked in diagnosis, and no proven way to improve their chances of recovering sensory function, movement, bowel and urinary control, or other bodily functions. There are reports of near-full recovery following intense rehabilitation, but many never recover any significant functions.
Instead of focusing on recovery, most treatment given to those with this type of diagnosis address issues related to secondary infections — primarily pneumonia, urinary tract infections, and bedsores — and increasing quality of life.
With the right resources and assistive technology, they can often remain living at home under the watchful eyes of family caregivers and home health nurses. Technology can greatly extend and improve their lives, thanks to:
- Chair, stair, and other lifts
- Special hospital beds
- Customized power wheelchairs
- Ventilators and other respiratory aids
- Communication devices
Establishing a means of communication is key to building a high quality of life for those with locked-in syndrome. Today, high tech eye gaze devices and brain/computer interfaces allow patients to communicate in full sentences, better explain their experience and even contact one another online. Surfing the web, using social media, and other similar experiences are possible today when they were not just a few years ago.
You May Be Eligible to File for Compensation Related to a Locked-In Syndrome Diagnosis
If you or a loved one has a locked in syndrome diagnosis, you may be eligible to pursue compensation for your medical bills and more. Let us review your case and determine if you can take legal action. This may be possible if we find:
- Traumatic brain injury caused locked in syndrome; or
- There were complications because of delayed treatment; or
- A medical error caused the stroke or another injury; or
- The doctor failed to diagnose locked in syndrome; or
- Medical malpractice caused a brain injury and locked in syndrome
If we can negotiate an out-of-court settlement or win a payout in court in your case, you could recover damages for your expenses and losses. This could include:
- Medical care costs
- Ongoing and future care costs
- Assistive, mobility, and communication tools
- Lost wages
- Diminished earning capacity
- Out-of-pocket expenses
- Pain and suffering
- Mental anguish
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