Individuals & Families

How to Find a Doctor – A Guide for Adults with TSC

If you have just been diagnosed with tuberous sclerosis complex (TSC), are moving to a new location, or are a young adult with TSC who is no longer eligible for pediatric care, finding a doctor who is knowledgeable about TSC may be very difficult. Choosing a doctor is important for everyone. But for someone with TSC, having health care professionals who understand the need for ongoing surveillance and care may mean a much better quality of life and a lower chance of severe health issues arising in the future.

TSC Clinics

If you live in an area with a TSC Clinic that serves adults, it is suggested that you discuss your health care needs with the Clinic Coordinator to ensure the services provided meet your needs.  The health care providers associated with TSC Clinics are familiar with this disorder and are connected to new and upcoming treatments.  Be sure to ask if the clinic accepts your health care insurance and if the clinic has the specialists you need for your care (nephrologists, geneticist, etc.).

If you are in an area without a TSC Clinic or with a clinic that provides care for only children and/or young adults, you will have to take the lead in choosing your health care providers. The following information has been developed to help you with this process.

Other Ways to Find a Doctor

The first thing we suggest is that you utilize one of the free TS Alliance’s online discussion groups. These groups offer great ways to ask questions and get recommendations from other adults with TSC who may have already experienced what you are going through.  You can easily join the discussion groups at:

Secondly, you can access the TS Alliance’s TSC Connect network to see if anyone in your area has a recommendation.

Finally, don’t be afraid to ask friends and families and any other medical professional with whom you have a relationship to get recommendations for health care providers.

Questions to Ask

Here are some questions you may want to ask your friend, family, or medical professional if they recommend a prospective health care provider to you:

  • Why do you like this doctor?
  • Does the doctor listen attentively to their patients?
  • How long does it take to get an appointment?
  • Is the doctor knowledgeable about TSC?
  • If the doctor isn’t knowledgeable about TSC, is he/she willing to learn?

Know Your Own Signs and Symptoms

When you are looking for a health care provider, understand what type of physician you need. To do this, you will need to understand your own manifestations of TSC.  For information on the various manifestations of TSC, please visit Signs and Symptoms.  ßlink: http://tsalliance.teramark.com/about-tsc/signs-and-symptoms-of-tsc/

Utilize the TS Alliance website to stay current about the recommended testing, screening and new treatments for TSC. Become an expert in your own disorder. Make sure the primary care providers have access to specialists for referrals to cover all of the manifestations of TSC you need.  Ensure that he/she has access to:

  • A neurologist is a physician who specializes in the diagnosis and treatment of disorders of the central nervous system. The central nervous system consists of the brain, spinal cord, and all the nerves in your body. Neurologists are usually trained to provide care for children (child or pediatric neurologist) or adults (adult neurologist).
  • An epileptologist is a medical doctor who specializes in treating patients who are diagnosed with epilepsy.  These physicians are trained as neurologists and also receive specialized training in epilepsy.
  • A neurosurgeon specializes in surgical procedures that involve the central nervous system.  Often neurosurgeons will sub-specialize and only perform surgery on individuals with epilepsy, on those with brain tumors, or on those with other conditions.
  • A geneticist is a physician who is trained to diagnose genetic conditions and to provide recommendations about follow-up care for individuals with genetic conditions.
  • A genetic counselor is trained to assist you in decisions regarding obtaining genetic testing for TSC, as well as for reproductive decision making.
  • A nephrologist is a physician who specialize in the diagnosis and treatment of kidney diseases.
  • A urological surgeon is a physician trained to surgically treat conditions involving the bladder and kidneys.
  • A pulmonologist is specially trained in diseases and conditions of the lungs.
  • A dermatologist is specially trained to diagnosis conditions of the skin, and some, but not all, are trained to treat the skin manifestations of TSC.
  • A cardiologist specializes in diagnosis and treatment of conditions that involve the heart.
  • A psychiatrist is trained primarily as a clinician to diagnose, treat and provide ongoing care for mental health issues.
  • A neuropsychiatrist deals with mental disorders attributable to diseases of the nervous system.
  • An oncologist is a doctor who specializes in the treatment of cancer.
  • An ophthalmologist is a medical doctor or doctor of osteopathy who specializes in the medical and surgical treatment of eye diseases.
  • An interventional radiologist is trained to perform surgical procedures while being guided by imaging techniques (such as to perform an embolization of a renal angiomyolipoma in an individual with TSC).

Many doctors have agreements to practice with certain hospitals in their area.  Make sure the doctor you are considering has privileges at the hospital of your choice.

Many doctors are in a group practice, which means you might see more than one doctor depending on who is available for your appointment.  If this is a problem for you, you should inquire about the ability to use one physician for all of your appointments.  You may also be more comfortable having a female or male doctor, so you should inquire about the ability to have a physician of your choice.

When you are looking for a doctor there are questions you might want to ask.  To assess whether a doctor meets your personal needs, ask the person answering the phone some general questions, such as:

  • Is the doctor accepting new patients?
  • If you call for an appointment, what is the average time it takes to get an appointment (days, weeks, months)?
  • How far in advance would they like you to call for an appointment?
  • If I have a question will the doctor or a nurse call me back?  Will they correspond with me via email to answer simple questions I might have between appointments?
  • What happens when the doctor is out of the office (vacation, sickness, family emergency)?  Who will respond through the office if I call in, or to me directly?  Who will cover their patients for them when they are out of the office?
  • What insurance does the doctor accept?  Do you accept the insurance I have?
  • Where is the office located?
  • What are the office hours?
  • Is the office accessible to public transportation?

How the office staff answers these questions will tell you a lot about the doctor’s practice and if this is the type of setting you want.

The first step is finding a health care provider. The second step is talking with the doctor and making sure he or she is a good fit for you.  Make sure the doctor is willing to listen to you — especially if he/she is not familiar with TSC.

Finding health care providers may be difficult, but if you can find providers who are willing to listen to you, and are open to learning about TSC, it can make this process much easier and will provide you with quality health care.

Other Resources

Because the treatment of TSC may involve a variety of health care professionals, it is very useful to have a working system to track ongoing medical care and treatment. The TS Alliance has a useful tool called the Adult Journal, which was specifically designed to provide you with an organized way of keeping accurate records of medications, procedures, appointments, therapies, surgeries, tests and manifestations.

The Adult Guide of the Life Stages Program (21 and Above) provides resources and support for dealing with TSC throughout llife and is geared more toward adults who are dependent/semi-dependent.

The Young Adult Guide of the Life Stages Program (14-21) provides you with resources and support dealing with TSC throughout your young adult life.