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Finding a Doctor

Angioma Alliance receives frequent calls and emails from individuals who are seeking a doctor who specializes in cavernous angiomas.  While we can’t recommend a specific doctor, we can provide strategies for obtaining a qualified physician in the United States and in some other countries.

If you do not live in a major metropolitan area, you may need to travel find a specialist. Finding the right doctor is the best way of ensuring that you receive appropriate care and is worth the extra time and expense.  

Neurosurgeon

The first place to start in looking for a surgeon is the neurosurgeon’s professional organization, AANS.  They offer a Find a Neurosurgeon feature  on their website that will generate a list of neurosurgeons that can be filtered by geographic area and by general specialty area. Many neurosurgeons who practice outside of the United States are also members of this organization. When you search, type in your area code or your state and select “Cerebrovascular” as the specialty area. This should generate a list of specialists with the area in which they practice. If it returns no results, you will need to broaden the geographic area you choose. Once you have the list, you can click on each name to see the doctor’s full contact information.

We suggest limiting your search to neurosurgeons that have university medical center or specialty center affiliations.  While there may be great neurosurgeons working in community hospitals, your odds of finding the right neurosurgeon are better in larger settings. Often, neurosurgeon contact information will include the name of their hospital.  Otherwise, you can cross reference your neurosurgeon list with the faculty of medical schools or specialty hospital staff in the cities represented by the doctors on your list. If you don’t know the name of the hospitals in a particular city, use Google or another search engine to find them.

You can make the final choice of the doctors you will consult by doing more internet research. With cavernous angiomas, more experience is usually better, but you can’t always tell who has the most experience by their age. Things you can try:

  1. Use our Community Forum and our Community Forum Archives. Search our Community Forum and our archives to see if anyone has mentioned the doctor. Community Forum members can contact each other via PM and/or email.  Or, post a request asking for contact with anyone else who has seen these doctors.
  2. See if the doctor has published any research on cavernous angiomas.  Go to PubMed and search on the doctor’s last name, first initial, and cavernous malformations, e.g., doe j cavernous malformations. Having no publications is not necessarily a reason not to see a doctor, but if the doctor has many publications, it is a point in their favor.
  3. Look at the doctor’s information page on their employer’s website and see if they list vascular malformations as a specialty area.
  4. Check with your insurance company to see who is on the list of their providers. This isn’t a measure of their competence, but, in the US at least, it must be a factor in choosing a doctor.

When you meet with a neurosurgeon for the first time, take along a copy of the Questions to Ask Your Doctor section from this site. If you are considering surgery, remember to ask the doctor how many cavernous angioma resections he or she has performed.  If yours is in the brainstem, you will also want to know how many resections have been in the brainstem.  Less than 10 resections is not sufficient experience, and you should seek another opinion.  Unfortunately, there are very few doctors with experience removing spinal cord cavernous angiomas because they are so rare.  You may need to travel even further to find the right doctor. 

Neurologist

Identifying a neurologist with enough knowledge of cavernous angiomas is more difficult than identifying a surgeon.  The neurologists’ professional organization does not have a search engine similar to the one that is on the neurosurgeons’ site.  There are also very few neurologists who have cavernous angiomas as an interest area because they consider this a surgical disease.  Instead, a good place to start is by looking at the website of nearby university medical centers to read about their neurology faculty.

 

Neurologists are useful for treating symptoms associated with cavernous angiomas, so you will want to look for neurologists that specialize in your particular symptoms, e.g., epilepsy, headache, or stroke (neurological deficits). A few may even list vascular malformations as a specialty area.  To narrow the list, you can follow the same process that you would use for neurosurgeons, checking with the Community Forum, looking for publications, and consulting your insurance company.

Other Specialty Resources

Neuro-ophthalmologist – this profession is comprised of medical doctors who specialize in eye difficulties with neurological causes. They are able to perform eye surgeries when necessary.  You can find a local neuro-ophthalmologist using the Find a Neuro-Ophthalmologist feature provided by NANOS, their professional organization. Specialists from some other countries can be located using this search feature.

Vision Therapist – this profession is comprised of optometrists, not medical doctors, who evaluate more complex vision deficits and treat them with regularly scheduled therapy that introduces exercises and activities that may be useful in improving vision. You can search for a vision therapist in your area using the College of Optometrists in Vision Development search engine.

Genetic Counselor – this profession can help you make decisions about genetic testing and can you to understand the implications of genetic testing results. You can find a local genetic counselor at the National Society of Genetic Counselors' website. The genetic counselor will probably not be familiar with cavernous angiomas, but they will have a great deal of experience with autosomal dominant diseases. Most genetic counselors are happy to do the research required to get up to speed on this particular illness. 

If there is another specialty that you need, google the profession or specialty along with “professional organization”. Most specialties have a search engine to enable you to find a local specialist on their site.

 

This page was last updated 6.16.2015