Finding A Doctor

The first doctor to discover symptoms of intracranial hypertension may be your primary care physician. Or it may be your ophthalmologist during a routine eye exam. Or it could be your neurologist. Once you are diagnosed, specialists like neurosurgeons, neuro-radiologists, neuro-ophthalmologists and many others may be called in to help. Because the treatment of chronic IH often requires a team of physicians, it’s important to find one doctor who will be the team leader.

Who’s in charge of my care?
The physician you choose should be able to act as your advocate and provide honest answers to your questions. Ask the physician directly if he or she will be the central director in charge of your care. Your team leader could be your primary care physician, your pediatrician, your neuro-surgeon or any of the doctors that you see regularly. Most importantly, he or she should be willing to oversee your care, facilitate communication between all of your physicians and act as your advocate.

Some general tips on finding doctors:
You may need to do a bit of homework to discover if a particular doctor is right for you.
Some of this information can be found on the Internet.

1. Check out where the physician works.
   • Are there good diagnostic facilities?
   • Does your physician have access to state-of-the-art imaging and labs?
   • Does your M.D. work in a multi-specialty team setting?
   • Are there peers in his/her specialty available for consultation, review and discussion?
2. Check out the physician’s background. Medical societies in the communities where a physician is licensed, can provide some of the following information. If a physician is affiliated with a university, the university itself can be a source of information on the doctor.
   • Is the doctor board-certified in his/her specialty?
   • Where did he or she train (educational background and medical internships/ fellowships/ residencies)?
   • Does he or she seem interested in patients with chronic intracranial hypertension?
3. Determine the physician’s experience in treating chronic IH.
   • Does he or she have experience treating chronic intracranial hypertension?
   • Is the doctor involved in IH research? Has he or she published on the subject?
   • Is the physician passionate—and compassionate—about this disorder?
   • How many cases does the physician treat each year?
     ("A lot of cases,” or “pretty experienced,” are general descriptions. It’s better to be specific and ask: “How many cases like mine do you treat (or operate on) per year?)
   • What are the outcomes of his/her medical and/or surgical management?
   • If he/she is not a surgeon, who does he/she refer chronic IH cases to and why?
   • If he/she is a surgeon, will he/she monitor your recovery and be readily available to manage any complications?
   • What is the treatment plan for you? What is the outcome that he or she expects in your case?
4. The Doctor/Patient Relationship.
   • Are you comfortable with the doctor?
   • Does he/she listen to what you have to say?
   • Do you trust him/her?
   • Does he or she want to help inform you to make the best medical decisions?
     (Suggests articles on treatment and options.)
   • Does he/she encourage questions and answer them to the best of his or her ability?

As a patient, be empowered by learning about your condition. If you’d like a second opinion, don’t hesitate to ask for one. Keep in mind that doctors have a limited range of tools to use when treating chronic IH. The most successful doctor/patient relationships are working partnerships.