Frequently Asked Questions

Where is the center physically located?

Stanford Hospital & Clinics
Cardiology Clinic, Second Floor
Stanford University Center for Marfan Syndrome and Related Aortic Disorders
300 Pasteur Drive, Room A266
Stanford, CA 94305 - 5233

Phone:  (650) 725 - 8246
Fax:      (650) 724 - 4034
E-mail:  marfan@cvmed.stanford.edu

What kind of a center do you have at Stanford for Marfan syndrome patients?

We are a multidisciplinary center offering diagnostic and management services for patients with Marfan syndrome and other related heritable aortic disorders.
 
Physicians from participating specialties -- cardiology, ophthalmology, orthopedics, cardiovascular surgery, diagnostic radiology, genetics, etc. work together to provide consultative diagnostic and health management services for both adults and children.
 
The Center is staffed by the Marfan Center Coordinator, Sunny Pellone, who serves as a triage and information resource for physicians, staff and patients.

Does your center see other patients, besides those with the Marfan syndrome?

Yes, we offer consultative diagnostic and follow-up services for those patients thought to have other related aortic disorders that include familial aortic disease, Bicuspid aortic valve disease, aortic aneurysms, mitral valve prolapse and aortic dissection.

When does the Stanford University Center for Marfan Syndrome and Related Aortic Disorders hold clinics?

Genetics and ophthalmology evaluations are done on Mondays at the Lucile Salter Packard Children's Hospital Outpatient Clinic.
 
Adult cardiology evaluation is done on Mondays, Wednesdays and Fridays and pediatric cardiology evaluation is done on Tuesdays.
 
We attempt to provide appointments with the appropriate specialists on the same day whenever possible, particularly for those who are traveling from a distance.

How are Marfan syndrome and aortic disorders diagnosed?

Marfan syndrome is diagnosed based on a thorough physical examination of various body systems and a detailed family history.

Certain tests such as an echocardiogram of the heart and a detailed eye examination by an ophthalmologist provide valuable information in the evaluation of patients for the Marfan syndrome.

Aortic disorders are diagnosed through a thorough physical examination and a detailed family history with cardiac imaging that include the latest innovations of echocardiograms (ultrasound of the heart), CT Scans (Computerized Axial Tomography) and MRI Scans (Magnetic Resonance Imaging).

Is there a specific laboratory test that can be done to diagnose Marfan Syndrome?

There is no specific diagnostic laboratory test commercially available to determine if someone has Marfan syndrome. The diagnosis is based on clinical findings and past medical history while taking into account family history.

What are typical appointments needed for a new patient evaluation?

A thorough evaluation for the Marfan syndrome and related aortic disorders would include:

If any of these evaluations have been performed recently elsewhere, please bring this to our attention when scheduling your appointments with us.

Do you accept self-referrals?

Yes, at present we accept both physician and self-referrals.

Are you able to determine over the phone as to whether I should be seen?

Unfortunately, we are not in a position to diagnose anyone over the phone.

If you suspect that you have the Marfan syndrome or an aortic disorder based on what you have read or on the recommendation of your physician or other affected family members, then it would be appropriate to be seen for an initial evaluation.
 
If you already carry a diagnosis of Marfan syndrome or a diagnosis of a known aortic disorder and wish to be seen, this is certainly appropriate.

How can appointments through the Center for Marfan Syndrome be scheduled?

You may call the Stanford University Center for Marfan Syndrome and Related Aortic Disorders at (650) 725 - 8246 Monday through Friday, 8:00am -  5:00pm, and speak to Sunny Pellone, the Marfan Center Coordinator.
 
You may also leave a voice mail or an email message and your inquiry will be returned as soon as possible.
 
When scheduling, please have home and work addresses with phone numbers, Social Security numbers, birth dates, medical insurance information, referring or primary care physician address with phone numbers readily available.

Will my insurance cover appointments through the Stanford University Center for Marfan Syndrome and Related Aortic Disorders?

There are so many different insurance companies and different policies written by a company that if you have questions about your policy, we ask that you call and speak with your insurance company directly.
 
If you belong to an HMO or other group health care plan that requires you to get an authorization from your primary provider, please contact that individual. A written authorization from that physician authorizing each appointment and test that you will need is required before we can schedule your appointments. You can fax these to us ahead of time by sending to (650) 724 - 4034.
 
Should your insurance company or primary care physician have questions regarding your appointments, they may call (650) 725 - 8246 for additional information.

Do I need previous medical records?

We encourage patients to hand-carry relevant medical records to their appointments.

These medical records might include:

We also ask you to fill out a family history questionnaire, bring photographs of various relatives, and autopsy reports if pertinent.

Can you advise me regarding physical activity restrictions prior to my appointment?

No, because we have not formally evaluated you yet. It would be presumptuous on our part and not in your best interest to either place or lift any physical restrictions imposed on you by other physicians.

Is there research related to Marfan Syndrome and Related Aortic Disorders going on at Stanford?

Yes, there is genetic molecular research going on at Stanford specific to the Marfan syndrome and other related heritable aortic disorders.
 
Currently, through the use of modern research techniques and equipment designed for use in the field of molecular biology, we are involved in studying families in order to identify genetic changes that are thought to give rise to the Marfan syndrome and other related heritable aortic disorders.
 
We anticipate that this research will further advance our understanding and ability to diagnose and treat Marfan syndrome and other related heritable aortic diseases in the future.

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