What Is a Paraganglioma?
Paragangliomas are growths (tumors) that form from nerve cells. Nerve cells help control daily functions, like blood pressure and heart rate. The cells use hormones to send messages to your brain. The messages help your brain do things like respond to stress or manage your heart rate. Some paragangliomas change how and when your nerve cells send these signals.
Paragangliomas are rare. Two in every 1 million people have one. They are most common in people ages 30–50. Paraganglioma tumors grow slowly, but they can still spread or grow in other parts of your body. Paragangliomas can also cause problems by growing and pressing on nerves and other structures.
Is Paraganglioma Cancer?
Most head and neck paragangliomas are benign (non-cancerous). It’s possible to remove most benign tumors.
If cells from a tumor have a certain mutation, they may spread to other locations in the body (metastatic paraganglioma). Certain risk factors can show whether paragangliomas will spread or show up in other body parts. The primary risk factor is a certain type of genetic mutation called an SDH mutation.
Why Choose University of Utah Health?
University of Utah Health is the only academic medical center in the state of Utah and the Mountain West. We are internationally recognized as a leading research and teaching center, where we train the majority of Utah’s health care professionals. Our team is committed to personalized care that helps you get the best possible outcomes.
Our skull base surgeons are among the most experienced in the region. On average, we care for roughly 30 skull base paraganglioma patients a year. Our high patient volume means we are competent, experienced, and capable of providing the care you need.
Paraganglioma Causes
Paragangliomas often have no known cause. These are called “sporadic” paragangliomas. DNA changes (mutations) passed from parents to children can also cause tumors. They are called familial or hereditary paraganglioma. The DNA changes help determine where the tumor starts.
Paraganglioma Locations
You can have a paraganglioma anywhere from your skull base to your pelvis along major nerves and blood vessels. Different locations may cause different symptoms. Paragangliomas are most often found in your head and neck areas:
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Carotid paragangliomas sit at a fork in one of the main blood vessels in your neck (the carotid arteries). They are also known as carotid body tumors.
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Jugular paragangliomas are located at the base of your skull near your jugular vein. Your jugular vein is a large blood vessel that returns blood from your brain to your heart. These tumors are also called glomus jugulare tumors.
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Laryngeal paragangliomas develop in the area of your throat where your vocal cords (larynx) are. They can make it harder to swallow or breathe.
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Middle ear paragangliomas are also called glomus tympanicum tumors. They form near your eardrum and can cause hearing problems. You may also experience a pulsing sound in your ear or dizziness.
Paraganglioma Symptoms
Paraganglioma symptoms depend on the tumor’s location, size, and activity. Tumors near your ear, throat, or major blood vessels may cause certain symptoms:
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Blurred vision
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Changes in voice quality
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Difficulty breathing
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Dizziness or balance problems
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Hearing loss
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Pulsing or “whooshing” sounds coming from inside your ears
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Trouble swallowing
Some head or neck paragangliomas make and release hormones. There are common symptoms of hormone-related paragangliomas:
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Excessive sweating
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Fatigue
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Feeling shaky
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Hyperglycemia (high blood sugar)
When Should I See a Paraganglioma Specialist?
Paraganglioma symptoms are similar to other health conditions. Schedule an appointment with your health care provider if you experience any troubling symptoms. Together, you and your provider will focus on finding the cause of your concern.
Our Parangalioma Specialists
Carotid Body & Vagal Paraganglioma Specialists
6 Resulting Health Care Providers
Luke O. Buchmann, MD
Richard B. Cannon, MD
Sarah M. Drejet, MD
Jason P. Hunt, MD, MS, FACS
Hilary McCrary, MD, MPH
Marcus M. Monroe, MD
Skull Base Paraganglioma Specialists
4 Resulting Health Care Providers
Craig A. Buchman, MD, FACS
Mana Espahbodi, MD
Richard K. Gurgel, MD, MSCI
Neil S. Patel, MD
Neuorsurgeons
5 Resulting Health Care Providers
Karol Budohoski, MD, PhD, FRCS
William T. Couldwell, MD, PhD, FACS
Ramesh Grandhi, MD, MS
Robert C. Rennert, MD
How Are Paragangliomas Diagnosed?
If you have symptoms, your provider may start with genetic testing. This helps your provider decide which tests will work best. There are several tests to diagnose a paraganglioma:
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Blood or urine tests look for chemical markers related to tumor activity.
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Images like those from a CT or MRI scan help see if you have a tumor. They also show their size and location.
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Family history reviews find out if any of your relatives may have had similar symptoms or tumors.
Sometimes, your provider finds tumors in imaging scans you get for a different condition.
U of U Health's Skull Base Tumor Second Opinion Program
Facing a medical diagnosis can be overwhelming. Our world class experts offer second opinions on skull base tumors.
What to Expect at Your Appointment
You’ll meet with a member of our skull base tumor team. If you have seen a different health care provider for symptoms, please bring all your test results:
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Balance tests
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CT or MRI scans
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Genetic tests
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Hearing tests (audiogram)
You and your provider will discuss your symptoms and concerns. Together, you’ll review any test results. We will also arrange any tests you might need. Your provider will perform a physical exam. Part of your exam may include tests:
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Nasal endoscopy—We use a thin, flexible camera to look at your nasal passages, throat, and voice box.
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Swallowing X-ray—We take images of your throat and esophagus as you swallow.
You may also undergo a whole-body scan to look for other paraganglioma tumors. Your first appointment usually lasts 30–45 minutes. At the end of your appointment, your provider will have a care plan in place. We will help you schedule any future appointments.
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Paraganglioma Treatment
Paraganglioma treatment depends on several factors, such as the tumor’s size and location. Your provider will also consider if the tumor has spread or makes hormones. We make a treatment plan based on your needs. We offer a variety of treatment options:
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Surgery removes all or some of the tumor. Surgery may include a procedure that starves the tumor of its blood supply.
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Radiation therapy, including stereotactic radiosurgery, uses focused, high‑energy beams aimed at the tumor to slow or stop its growth.
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Active monitoring uses regular scans and checkups to track small or slow‑growing tumors.
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Ablation uses needles that destroy paragangliomas by delivering heat or cold directly to the tumor.
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Chemotherapy includes strong anticancer drugs that attack tumor cells.
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Medication controls hormone levels and other body functions that the hormones might be affecting.
Your provider may suggest a combination of multiple treatment options based on your needs.
Paraganglioma Surgery
Your surgical team may include several different specialists, depending on the tumor’s location:
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Head and neck surgeons
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Skull base tumor surgeons
In rare cases, a paraganglioma tumor can release hormones during or after surgery. If the tumor secretes hormones, your provider will take precautions before surgery to prevent that. You may need to take medication that blocks the hormone’s impacts for a week or two prior to the surgery. This is rare for tumors in the head and neck.
Depending on the location of the tumor, your surgeon will make an incision between your neck and scalp to access the paraganglioma. During surgery, we use a large operating microscope that hovers above your body and provides a highly magnified view of the tumor.
Make an Appointment
Fill out our online form to make an appointment with one of our lateral skull base tumor specialists. You don’t need a referral, but you should check with your insurance first as some insurance companies require referrals.
Get a Consultation
Not located in Utah? If you have a diagnosis, you can contact us for a consultation. Once we have scheduled the call, we will set up a phone call to discuss your diagnosis with you. We will request that you send us copies of relevant tests:
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CT or MRI images
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Results from hearing, balance, or other tests
Contact the Destination Care Program
The Destination Care Program is an initiative by U of U Health focusing on care for our out-of-state patients. We are here to help you find the services and information you need. Feel free to contact us:
Email: DestinationCare@hsc.utah.edu
Phone: 801-587-6365