The waiting room

What usually happens

The scan itself usually takes 20 to 50 minutes, inside a fairly narrow tube with a loud noise. Contrast dye may be injected into a vein partway through. A radiologist writes the report after the scan, and the doctor who requested it explains it to you; that usually takes days.

What helps

• Tell the department in advance about any device or metal in your body: a pacemaker, a pump, fragments, or past operations.
• If you’re afraid of enclosed spaces, say so when you book, not at the scanner; there are solutions, including mild sedation under medical supervision.
• Ask for earplugs or headphones, and ask how long it will take.
• Don’t read the radiographer’s face; they usually aren’t allowed to give results, and silence means nothing.

When not to wait

If, while waiting, you develop sudden weakness, trouble speaking, a sudden severe headache or a seizure, go to the emergency department; don’t wait for the scan appointment.

What usually happens

Small sensors are fixed to the scalp with a paste, and the recording usually takes 30 to 60 minutes. You may be asked to breathe deeply and fast for a few minutes, and to look at a flashing light. It doesn’t hurt, and it puts no electricity into the brain.

What helps

• Wash your hair that day, with no oils, creams or gel.
• If you’re asked to sleep less the night before, follow the instructions exactly; lack of sleep can reveal changes that otherwise stay hidden.
• Take your medicines as usual unless told otherwise, and bring a list of them.
• If you have a video of the seizures, bring it; it may help more than the EEG itself.

When not to wait

A seizure lasting five minutes or more, or seizures one after another without waking, can’t wait for the EEG appointment. Seizure first aid.

What usually happens

Some tests come back in hours; others, such as genetic and immune tests, may take weeks because they are sent to an outside laboratory.

What helps

• When the sample is taken, ask: when will the result be ready, how will I hear, and who will explain it?
• No phone call doesn’t always mean a normal result. If the expected date has passed, ask.
• If the result appears in an app before your appointment, don’t try to interpret every number alone. Slightly “high” or “low” flags are common and don’t necessarily mean illness.

When not to wait

If symptoms get worse while you wait, the symptoms matter more than the result. See your doctor or go to the emergency department.

What usually happens

The appointment is shorter than you’d like, and questions are forgotten at the door. Preparing makes the few minutes count.

What helps

• Write the story briefly: when the symptom started, how often it happens, what makes it worse or better.
• Bring a list of your medicines and doses, and previous reports and scans.
• If the symptoms come and go, film them if you can, or ask whoever sees them to film.
• Choose your three most important questions, and start with them.
• Bring someone to take notes with you, if you can.

Questions that suit most appointments

1. What do you think is happening to me?
2. What else could it be, and how will we tell the difference?
3. What is the next step, and why?
4. Which signs mean I should come back sooner, or go to the emergency department?
5. Could you write down the name of the diagnosis or possibility?
6. Where can I find trustworthy information about my condition?

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When not to wait

If urgent signs appear before the appointment, don’t wait for it. When do you need urgent help?

What usually happens

Some neurological conditions can’t be diagnosed in one visit. The doctor may need tests one after another, or to see how symptoms develop over time. That isn’t neglect; sometimes time is part of the diagnosis.

And when a diagnosis arrives, it can feel like a mix of relief that the symptoms have a name, and fear of what that name means.

What helps

• You don’t need to understand everything in the first week. Ask first: what do I need to do now, and what can wait?
• Ask for the name of the diagnosis in writing, and read about it from trustworthy medical sources, not only from individual stories.
• A second medical opinion is a legitimate right, not an insult to your doctor.
• You decide whom to tell, and when.

When not to wait

If symptoms change quickly or new ones appear, don’t wait for the tests to finish. Tell your doctor or go to the emergency department.

What usually happens

Before any neurosurgical operation, the aims and risks are usually explained at a dedicated appointment, tests are done, and instructions are given about fasting and medicines.

What helps

• Ask: what do we expect from the operation, what are the alternatives, and what happens if we don’t operate?
• Ask about recovery: how many days in hospital, and when you can return to work and driving.
• Don’t stop blood thinners or other medicines on your own. Follow the surgical team’s instructions exactly.

When not to wait

If symptoms worsen before the date of the operation, tell the surgical team at once; it may change the timing.

What usually happens

Discharge day is busy: paperwork, medicines and appointments. Much of what is said gets forgotten at home.

What helps

• Ask for the discharge summary in writing: what happened, the diagnosis, and the plan.
• Go through the medicine list line by line: what is new, what was stopped, and what dose changed.
• Know the follow-up appointments, and any physiotherapy or rehabilitation.
• Ask: which signs mean we should come back straight away, and whom do we call with a question?

When not to wait

If new symptoms appear at home, or old ones return strongly, don’t wait for the follow-up appointment.