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Questions to Ask Your Doctor

When you are first diagnosed, it is likely you will feel overwhelmed by the choices you must make. Which doctor? Which hospital? Surgery or not? What next? Sometimes it is hard to think clearly and get the answers you need to make informed decisions. Angioma Alliance members have put together a list of questions you should ask your physician. You will probably want extra time to consider the information you receive, so make sure you or someone you trust takes thorough notes for your review later.

General Questions

    1. What size is the cavernous angioma? You may prefer to use the term cavernoma, cavernous malformation, or CCM if this is what your doctor uses. 

    2. How many cavernous angiomas do I have?

    3. What is the exact location of the cavernous angioma?

    4. What functions does this area of the brain perform?

    5. Do there appear to be any venous or other malformations in the vicinity of the cavernous angioma?

    6. Does it appear to have bled previously?

    7. In your opinion, what are the conditions under which you recommend surgery to remove a cavernous angioma?

    8. Are there any other treatments you consider?

    9. What tests do you recommend? (MRI, functional MRI, MRA, angiogram, etc)

    10. If I had another bleed, what deficits would you expect?

    11. What symptoms would warrant a call to you or a trip to the ER?

    12. Should I have my children (or anyone else in my family) tested?

    13. Should I have a genetic test to determine if I have the hereditary form of the illness?

    14. Should I be concerned about possible cavernous angiomas in other areas of my body? Should my spine be scanned?

    15. What restrictions in activities do you recommend?

    16. Are you concerned about my blood pressure?

    17. What medications, prescriptions and over the counter, do you recommend I avoid? Are there any vitamins or supplements to avoid?

 

Management

  1. How often will I have follow up tests (and which ones)?

  2. How often will I follow up with you?

  3. What will you be looking for while monitoring me? (What changes are you looking for?)

  4. Is there anything I can do to minimize the risk of a bleed (or re-bleed)?

  5. What is the risk of re-bleed?

  6. How would I know if I had another bleed? (i.e., what symptoms would you expect to see?

  7. What would cause you to recommend surgery?

Surgery Resection Recommendation

  1. How long would you estimate the surgery to take?

  2. How long would you estimate for recovery from surgery?

  3. How long will I be in the hospital?

  4. When do you expect I will be able to return to work and /or daily responsibilities?

  5. What, if any, additional deficits would be possible as a result of the surgery?

  6. Would you anticipate any of the deficits to be permanent?

  7. Can my cavernous angioma come back after surgery?

Surgeon’s Background

  1. How many of these have you seen?

  2. Do you have a cerebrovascular specialization?

  3. How many cavernous angiomas have you removed surgically?

  4. (If you have a brainstem cavernous angioma) How many of these were brainstem cavernous angiomas?

 

This page last updated 11/5/15.