Sometimes it’s hard to think clearly and get the answers you need to make informed decisions. Pages 32-34 in our 20 Questions Answered booklet offers basic questions with space for writing answers and can be printed to take to your specialist appointment. We’ve also listed these questions below.
As you become more familiar with your illness or run into special situations, you may have additional questions related to the management of the illness and to surgery.
General Questions found in 20 Questions Answered
- What size is the cavernous malformation? You may prefer to use the term cavernoma, cavernous malformation, or CCM if this is what your doctor uses.
- How many cavernous malformations do I have?
- What is the exact location of the cavernous malformation?
- What functions does this area of the brain perform?
- Does there appear to be a developmental venous anomaly (DVA) or other malformation in the vicinity of the cavernous malformation?
- Does it appear to have bled previously?
- In your opinion, what are the conditions under which you recommend surgery to remove this cavernous malformation?
- How often will I have follow-up tests (and which ones)?
- How often will I follow up with you?
- If I had another bleed, what symptoms would you expect?
- What symptoms would warrant a call to you or a trip to the ER?
- Are there any other treatments you consider?
- What tests do you recommend? (MRI, functional MRI, MRA, EEG, etc)
- What will you be looking for while monitoring me? (What changes are you looking for?)
- Should I have my children (or anyone else in my family) tested?
- Should I have a genetic test to determine if I have the hereditary form of the illness?
- Should I be concerned about possible cavernous malformations in other areas of my body? Should my spine be scanned?
- What restrictions on activities do you recommend?
- What medications, prescription and over-the-counter, do you recommend I avoid? Are there any vitamins or supplements to avoid or add?
- Is there anything I can do to minimize the risk of a bleed (or re-bleed)?
- What is the risk of re-bleed?
- How would I know if I had another bleed? What symptoms would you expect to see?
- What would cause you to recommend surgery?
- Should I be referred to any other specialists?
Surgery Resection Recommendation
- How long would you estimate for recovery from surgery?
- Do you think I will need inpatient or outpatient rehab?
- How long will I be in the hospital?
- When do you expect I will be able to return to work and /or daily responsibilities?
- What, if any, additional deficits would be possible as a result of the surgery?
- Would you anticipate any of the deficits to be permanent?
- Can my cavernous malformation come back after surgery?
- What surgical approach to the lesion will you take? (This is an advanced question asking the route the surgeon plans to take to get to your lesion during surgery.)
- How many patients with cavernous malformation have you seen?
- Do you have a cerebrovascular specialization?
- How many cavernous malformations have you removed surgically?
- (If you have a brainstem cavernous malformation) How many of these were brainstem cavernous malformations?