Much of the mail that is received at info@angiomaalliance.org comes from people who need help finding a neurosurgeon. Until we work out the liability issues, we will not maintain an extensive list of neurosurgeons for referrals. In researching doctors on your own, there are a number of very useful strategies:

In the US

Use the internet

Look for the website of the medical school that is nearest to you or where you would like to seek treatment. Look for the neurosurgery faculty page. If descriptions of the faculty training and interests are listed, look for neurosurgeons that have specialized in cerebrovascular surgery. If they are not listed, you can find out specialty areas using the Find a Neurosurgeon feature of the American Academy of Neurological Surgeons website. Type in the name of the doctor. You will be sent to a screen where you will see the name of the doctor and the city and state where he practices. Click on the name to receive more information. You will want to look for surgeons that list “Cerebrovascular” as a “Subspecialty Interest” area. If you are looking for a pediatric neurosurgeon, try to see if a surgeon has both a pediatric and a cerebrovascular subspecialty interest. If not, you may be better getting at least an initial consultation from a cerebrovascular surgeon with an adult focus.

Look at their research

Another way to get to know your doctor is to see what articles, if any, they have published in medical journals. The National Library of Medicine's PubMed service allows you to see article titles and their abstracts. When you reach the page, type in your doctor’s name in the “Search PubMed for:” box. You will get the best results if you can use the following format:

For Dr. Angela Jane Smith,

Type in Smith AJ

If you don’t know your doctor’s middle initial, you can leave it off. You may get a list of many articles not written by your doctor, but you can usually narrow this down by looking for specific cerebrovascular terms in the titles. If you’d like to read the abstracts, that’s great. But, it is enough simply to get a sense of where your doctor’s interests lie by looking at key words like “cavernous malformation,” “vascular malformation,” or “arteriovenous malformation” in titles. Don’t despair if your doctor has not published recently or has not published in this area. Many hospital-affiliated doctors are too busy with their clinical practices to do much publishing. It gives you more information if your doctor has published, but it does not say anything about the competence of a doctor if he or she has not.

Ask Our Community

Use our community forum and email list server to ask others about their experiences with the doctors you have found. Most people will have positive things to say about their own doctors – putting your brain in someone else’s hands makes trust, earned or unearned, essential. So, a positive review doesn’t mean a doctor is right for you; however, if you hear negatives, please take this into consideration.

Talk to the Doctor

Perhaps the most important way to find a neurosurgeon is to schedule an appointment and talk to the doctor about his experiences. It is very important to find out the number of surgeries a doctor has performed to remove cavernous angiomas in the area of the brain in which yours is located. If your cavernous angioma is in the brainstem and your doctor has never removed a brainstem cavernous angioma, move on to another surgeon.

Internationally

You can use many of the strategies as those described for US patients above. Try the Find a Neurosurgeon feature of the American Academy of Neurological Surgeons website by typing in your country name. This will give you a small list of names of physicians who are interested in having an international scope. You will find additional names by checking the World Directory of Neurosurgeons. Unfortunately, this listing does not break out doctors by specialty. Finally, most countries have their own neurosurgical professional organizations. Some of these organizations have web sites with their own directories. You may be able to find the organization through a major search engine like your country’s version of Google.com using some combination of “neurosurgery”, “professional”, and “association”.

Instructions for narrowing the search are the same as for those searching for US doctors above. Looking for a doctor’s faculty listing and searching for publications on PubMed work just as well internationally. PubMed lists articles published in all major medical journals, not just those in the US. Also, our community forum and email list server include international members who may be able to help you get more information about your surgeon.