Chronic traumatic encephalopathy

Diagnosis

There is no way to definitively diagnose chronic traumatic encephalopathy, also known as CTE, during life. But experts have developed clinical criteria for traumatic encephalopathy syndrome, also known as TES. The syndrome is a group of symptoms that occur together and are associated with CTE.

Healthcare professionals may suspect you have CTE if you meet criteria for TES and have had repeated head trauma over years during sports or military experiences. A diagnosis requires evidence of degeneration of brain tissue and deposits of tau and other proteins in the brain. This can only be seen after death during an autopsy.

Some researchers are actively trying to find a test for CTE that can be used while people are alive. Others continue to study the brains of deceased individuals who may have had CTE, such as U.S. football players.

The hope is to eventually use neuropsychological tests, brain imaging such as specialized MRI and other biomarkers to diagnose CTE.

Treatment

There is no treatment for chronic traumatic encephalopathy, and symptoms continue to get worse over time. More research on treatments is needed, but the current approach is to prevent head injury.

It's also important to stay informed about how to detect and manage traumatic brain injury. Therapies such as cognitive behavioral therapy and medicines may help symptoms of depression and anxiety.

Preparing for your appointment

You'll probably start by seeing your healthcare professional. You then may be referred to a specialist trained in nervous system conditions, known as a neurologist, or a doctor who specializes in mental health, known as a psychiatrist, for an evaluation. Or you may be referred to a specialist in neurology and psychology, known as a neuropsychologist, or other specialists for further evaluation.

What you can do

You can do the following to get ready for your appointment:

• Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance. For example, ask if you need to fast for blood tests.
• Write down any symptoms, including any that may not seem related to the reason you scheduled the appointment. Your healthcare professional will likely want to know details about your mental function. Try to remember when you first started to suspect that something might be wrong. If you think your symptoms are getting worse, write down why and include specific examples.
• Write down key personal information, including any major stresses or recent life changes.
• Make a list of all medicines, vitamins or supplements that you're taking.
• Make a list of your other medical conditions. Include conditions you are currently being treated for, such as if you have diabetes or heart disease. And list any conditions you've had in the past, such as strokes.
• Take a family member, friend or caregiver along, if possible. Sometimes it can be hard to recall all the information provided during an appointment. Someone who comes with you may remember something that you missed or forgot.

Prepare a list of questions before your appointment. List your questions from most important to least important. This can help make the most of your time with the healthcare professional. Some basic questions to ask your healthcare professional include:

• What is likely causing my symptoms? Are there other possible causes for my symptoms?
• What kinds of tests do I need?
• Is my condition likely temporary or long-lasting? How might it progress over time?
• What's the best course of action?
• What are the alternatives to the primary approach being suggested?
• I have other medical issues. How can they be managed together?
• Are there any restrictions?

Other basic questions to ask include:

• If medicine is being prescribed, is there a potential interaction with other medicines I am taking?
• Are there any clinical trials of experimental treatments I should consider?
• Are there any brochures or other printed material that I can take home with me? What websites do you recommend?
• Do I need to see a specialist? What will that cost, and will my insurance cover it? You may need to call your insurance provider for answers to some of these questions.

If you've had a concussion, some basic questions to ask your doctor include:

• What is the risk of future concussions?
• When will it be safe to return to competitive sports?
• When will it be safe to resume vigorous exercise?
• Is it safe to return to school or work?
• Is it safe to drive a car or operate power equipment?

Don't hesitate to ask questions during your appointment at any time that you don't understand something.

What to expect from your doctor

Your healthcare professional may ask you a variety of questions.

Questions related to symptoms:

• What symptoms are you having? Any trouble with word use, memory, focus, personality or directions?
• When did symptoms begin?
• Are symptoms steadily worsening, or are they sometimes better and sometimes worse?
• How severe are your symptoms?
• Have you stopped doing certain activities, such as managing finances or shopping, because of trouble thinking through them?
• What, if anything, seems to improve or worsen symptoms?

Other questions you may be asked related to symptoms:

• Have you noticed any changes in the way you tend to react to people or events?
• Do you have more energy than usual, less than usual or about the same?
• Have you noticed any trembling or trouble walking?

Questions related to health history:

• Have you had your hearing and vision tested recently?
• Is there a family history of dementia or other neurological disease such as Alzheimer's disease, ALS or Parkinson's disease?
• What medicines are you taking? Are you taking any vitamins or supplements?
• Do you drink alcohol? How much?
• What other medical conditions are you being treated for?

If you've had a concussion, your healthcare professional may ask questions related to events surrounding the injury:

• Have you had any previous head injuries?
• Do you play contact sports?
• How did you get this injury?
• What symptoms did you have immediately after the injury?
• Do you remember what happened right before and after the injury?
• Did you lose consciousness after the injury?
• Did you have seizures?

Questions related to physical symptoms:

• Have you experienced nausea or vomiting since the injury?
• Have you been experiencing headaches? How soon after the injury did the headaches start?
• Have you noticed any changes with your physical coordination since the injury?
• Have you noticed any sensitivity or problems with your vision and hearing?
• Have you noticed changes in your sense of smell or taste?
• How is your appetite?

More questions related to physical symptoms:

• Have you been easily fatigued since the injury?
• Are you having trouble sleeping or waking from sleep?
• Do you have any dizziness or vertigo?

Questions related to cognitive or emotional symptoms:

• Have you had any symptoms related to memory or concentration since the injury?
• Have you had any mood changes, including irritability, anxiety or depression?
• Have you had any thoughts about hurting yourself or others?
• Have you noticed or have others commented that your personality has changed?
• What other symptoms are you concerned about?

Living with chronic traumatic encephalopathy?

Connect with others like you for support and answers to your questions in the Traumatic Brain Injury (TBI) support group on Mayo Clinic Connect, a patient community.

Traumatic Brain Injury Discussions

See more discussions