I am 18 years old and need to find a doctor. What do I do?

Congratulations on your 18th birthday. You are now legally an adult and will be able to make your own decisions about your health care. In searching for adult-oriented doctors there are some things to consider:

1. What type of doctor or doctors do you need?
   1. Everyone should have a primary care physician to go to with common illnesses that anyone can get, as well as health maintenance care like immunizations, cholesterol screening, and blood pressure checks. For you, the best type of primary care adult medicine doctor is most likely a family medicine physician because they are familiar with Spina Bifida and are likely to have some experience with issues that can occur in Spina Bifida.
   2. Adult primary care doctors are not expected to replace your specialists, like your urologist or neurosurgeon. It is ideal to have ongoing care with both of these specialists as an adult. You can get a recommendation from your pediatric urologist and neurosurgeon. You will want a urologist who treats neurogenic bladders and a neurosurgeon who treats ventricular shunts (if you have a shunt).
   3. As an adult, you are less likely to need frequent care by an orthopedic surgeon. Since you have stopped growing, you are less likely to have new bone issues requiring surgery. However, you would benefit from a physical medicine and rehabilitation specialist (also known as a physiatrist) who can help with musculoskeletal issues, as well as with bracing, wh eelchair, and other equipment assessments. This doctor can also help with physical therapy and occupational therapy referrals, if needed. They can also help you find an orthopedist if a surgical issue arises.
   4. If you are a woman and are contemplating having children, it is best to discuss all of the issues of a potential pregnancy with an obstetrician who specializes in high-risk deliveries. You should meet with this sub-specialty obstetrician before you become pregnant.
      
      
2. What doctors are on your insurance?
   1. Not all doctors are on your insurance plan. Thus, make sure the doctors recommended by your pediatric team are listed in your insurance company's provider manual. Take the manual with you to your pediatric doctor and ask who they know and who they would recommend from the list.
   2. At age 18, many young adults remain on their parents' insurance plan for a period of time. This is an opportunity to get in the door at the adult doctor's office. If you are planning to apply for Supplemental Security Insurance (SSI) and take advantage of getting Medicaid insurance in the future, ask the new doctors if they keep their existing patients when their private insurance changes to Medicaid (some do).
      
      
3. Is the new doctor's office accessible to you (including being latex-free if you need to avoid latex)?
   1. Call ahead of time (before your first office visit) and ask about accessible parking, elevators, stairs, and the distances you will need to travel to:
      1. get from your care to the office,
      2. get blood drawn
      3. get radiographic tests done
   2. How is latex handled in the doctor's office?
      
      
4. Get old records sent to your doctor ahead of time.
   1. Ask your pediatric doctors to send at least their last office visit note, last operative report, and, if possible, a summary letter to the new doctor.
   2. Ask the radiology department if they can create a CD-ROM of your more recent tests (many can do this now). Bring this to your new doctors office.
   3. If the radiology department does not have this capability, ask them how you can get your most recent radiology reports. You will want at least:
      1. CT of the head and shunt series (if you have a shunt)
      2. Urologic studies (if you have a neurogenic bladder)
      3. MRI of the brain and or spine (if you have a Chairi malformation or had a tethered cord release)
      4. Xrays of any spinal rods, prosthetic joints, internal braces
         
         
5. Make a list of all of your medications (and pharmacies), allergies (including latex), and other doctors and have a copy ready to give to your new doctor(s) for them to keep. If the doctor needs to order equipment or supplies for you, put the contact information for the company on the list.
   
   
6. Go to the new doctor when you are feeling well. Spina Bifida is complicated and the new doctor may need to spend most of the time reviewing your history. S/he may ask you to come back for a second visit to finish the initial evaluation. S/he may also ask for new baseline tests. Please understand this helps her/him understand your medical issues better and will improve the care provided to you.

More information on health care for adults is available in the Health Guide for Adults Living with Spina Bifida available from the Spina Bifida Association Marketplace Publications webpage.