What you can do

• Keep a detailed symptoms calendar. Each time a symptom occurs, write down the time, what you experienced and how long it lasted.
• Write down key personal information, including any major stresses or recent life changes.
• Make a list of all medications, vitamins or supplements that you're taking.
• Take a family member or friend along. Sometimes it can be difficult to remember all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.

• Bring along any recent brain scans in a CD to your appointment.

  Also, if you've experienced seizures, your doctor may want to ask questions of someone who has witnessed them, as it's common not to be aware of everything that happens when you experience one.

Write down questions to ask your doctor

Preparing a list of questions will help you make the most of your time with your doctor. List your questions from most important to least important in case time runs out. Most of these would be covered during your visit. Some examples of good questions to ask your doctor follow.

General questions

• How many cavernous malformations do I have?
• Where is it, or where are they located?
• What functions do the area(s) of the brain perform?
• Should my children (or anyone else in my family) be tested?
• Should I have genetic tests for hereditary CCMs?

Management and observation

• How often will I need follow-up tests?
• How often will I follow up with you?

Surgery (to remove a malformation)

• How long would you estimate I'd be in surgery?
• How long does surgery recovery usually take?
• How long should I plan to be in the hospital?

Surgical background

• How many CCMs have you seen, and how many have you treated?
• Does your institution have a cerebrovascular specialty practice?

Other questions may be useful for your particular needs. The Angioma Alliance website offers a more extensive set of suggested questions.

In addition to the questions you've prepared to ask your doctor, 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 doctor is also likely to ask you a number of questions:

• When did you first begin experiencing symptoms (seizures, hemorrhage or bleeding, weakness in arms or legs, vision problems, balance problems, speech problems, difficulty with memory and attention, headaches, and so on)?
• Do your symptoms come and go (intermittent) or are they persistent (present all the time)?
• Do your symptoms seem to be triggered by certain events or conditions?

What you can do in the meantime

Certain conditions and activities can trigger seizures, so it may be helpful to:

• Avoid excessive alcohol consumption
• Avoid nicotine usage
• Get enough sleep
• Reduce stress