Receiving a diagnosis of a rare disease can be unsettling. Individuals affected, friends and family members often have questions regarding what to expect, or what actions they need to take. The initial contact regarding cavernous malformation may be through your primary care professional, or through a physician in the emergency department. They may have limited experience in dealing with cavernous malformation and may not be able to provide answers to all your questions. You may be referred to a neurologist, neurosurgeon, geneticist, stroke prevention, specialist, and/or other specialties. Each time you meet with a physician, consider which questions you'd like to ask, and keep a booklet with your questions and responses. You may find it helpful to have a friend or family member attend appointments with you for support. 

 

 CM = Cavernous Malformation, CCM = Cerebral Cavernous Malformation 

 

General Questions

• Do I have one of the genetic types of CM, or is it sporadic?

• Is genetic testing available to determine which type I may have?

• What is the process for my family members to have genetic testing?

• How many CMs do I have?

• Where is/are my CM(s) located, and what size are they?

• Should I have MRIs on my brain and spine?

• Based on the location(s) of the CM(s), what symptoms may I experience?

• What treatment options do you recommend to manage my symptoms?

• Are there any lifestyle changes or improvements I should consider?

• Are there any lifestyle restrictions I need to put in place?

• Can I continue to take my current medications?

• Are there any medications or supplements I should avoid?

• How will consuming cannabis and/or alcohol affect me?

• Am I able to take vaccines?

• What is the risk that one or more of my CMs with hemorrhage in the future?

• What might I expect if a CM starts to hemorrhage or ooze?

• In what situations would you recommend that I go to an Emergency Room when I experience symptoms? What should I tell the medical staff there about my condition?

• Is there any indication that having a CM will shorten my life expectancy?

• Could this lead to a learning disability or cognitive challenges?

• Where can I go for additional information about CM?

 

Symptom: Seizures

• What type of seizure do you think I am having (or at risk of having)?

• What did I suddenly start having seizures?

• Which CCM is causing the seizures?

• Does the seizure(s) mean my CCM is hemorrhaging or oozing?

• Because I'm having seizures, does this mean I have epilepsy?

• Will I need medication to control the seizures, and what are the possible side effects?

• What if the seizure medication doesn't stop the seizures?

• Are there any treatments besides medication?

• Will I need to make any lifestyle changes to help ensure my safety?

• Will I be able to drive?

• Can I keep my driver's licence?

• Will I have seizures for the rest of my life?

• Will I have seizures when I'm sleeping? Are there extra risks when that happens?

• Is my brain harmed or damaged when I have a seizure?

• What instructions should I give to my friends or family members who may be with me when I have a seizure?

• Should I go to the hospital, or should an ambulance be called if I have a seizure?

• Should I tell people I'm prone to seizures or wear medical ID?

• Is there anything specific I should do immediately after a seizure to help with recovery?

 

Symptom: Migraines

• Is it my CCM(s) that are causing the migraines?

• What are my treatment options?

• What can I do to prevent or reduce migraines?

• Is there a specialist I should be referred to for migraines?

 

Intimacy & Hormones

• Are there any limitations you suggest regarding sexual activity?

• Is it safe to take birth control medication?

• Am I able to be on hormone replacement therapy?

• Are there any concerns if I plan to, or become pregnant?

• Should I speak with a genetic counselor before starting a family?

• Is it safe to take medication such as Viagra?

 

Questions for Your Neurosurgeon

These questions can be found in on our Preparing for Surgery page. Click here to view them.