Rathke’s Cleft Cyst

What is Rathke’s cleft cyst?

Rathke cleft cyst is a growth on your pituitary gland. Your pituitary gland is a pea-sized organ at the base of your brain that makes and releases hormones, which regulate your body’s functions.

Most people don’t have any symptoms of Rathke’s cleft cyst — a provider sees it on head imaging that was ordered for an unrelated reason. But in some cases, it can grow large enough to affect your vision or cause hormone problems.

How common is Rathke’s cleft cyst?

Experts estimate 1% to 5% of people have a Rathke’s cleft cyst. As most people don’t have symptoms, it’s hard to know how common it is. It’s rarely found in kids and is most common in adults between the ages of 30 and 50.

What are the symptoms of Rathke’s cleft cyst?

Rathke’s cleft cyst can cause no symptoms at all (asymptomatic), but when it does, it usually affects your eyes and hormones. Symptoms of Rathke’s cleft cyst may include:

• Vision changes or loss of vision.
• Frequent headaches. (There are many different causes of headaches that aren’t related to Rathke’s cleft cyst.)
• Fatigue.
• Unexplained weight loss or weight gain.
• Constipation or other digestive problems.
• Low sex drive.
• Extreme thirst.
• Excessive peeing.
• Irregular periods (menstruation) or no periods.
• Dry skin.
• Difficulty regulating body temperature.
• Confusion, personality changes or behavior changes.
• Lack of growth or late puberty in children.

What causes Rathke’s cleft cyst?

Fluid in an area between parts of your pituitary gland causes Rathke’s cleft cyst. Early in fetal development, while your pituitary gland is forming, a pocket develops (Rathke’s pouch). It usually closes when your pituitary gland is completely formed, but in some people, it doesn’t. This pocket can fill with mucus-like fluid over time, creating Rathke’s cleft cyst.

Many cysts don’t grow or change, but a cyst that grows large or presses on different parts inside of your skull can cause symptoms. If it compresses the nerves that connect your brain to your eyes, it can cause vision changes. The most common vision change is loss of peripheral vision. If it pushes against your pituitary gland it can cause hormone-related symptoms, like fatigue, weight loss or low sex drive.

What are the complications of Rathke’s cleft cyst?

Complications of Rathke’s cleft cyst include:

• Vision loss.
• Diabetes insipidus.
• Hyperprolactinemia.
• Hydrocephalus.
• Pituitary apoplexy.
• Aseptic meningitis.

How is Rathke’s cleft cyst diagnosed?

To diagnose Rathke’s cleft cyst, a provider will do imaging or tests, including:

• MRI. Providers can see a cyst on MRI imaging. They’re often an incidental finding, found when doing imaging for another reason.
• Blood tests. These can check levels of hormones that would tell your provider if your pituitary gland isn’t working properly.
• Vision tests. These can help diagnose changes in your vision or issues with your optic nerve.

Do Rathke’s cleft cysts need to be removed?

Not usually. You don’t need treatment for Rathke’s cleft cyst if it isn’t causing symptoms. Only about 10% of people (1 in 10) with Rathke’s cleft cyst need surgery to drain it and remove as much of the cyst as possible.

The most common surgery for Rathke’s cleft cyst is endoscopic surgery. This is a minimally invasive procedure that a surgeon performs through your nose to get to the cyst.

Complications of Rathke’s cleft cyst surgery

Healthcare teams do everything possible to minimize risk during procedures. Still, complications sometimes happen. Possible complications of Rathke’s cleft cyst surgery include:

• Meningitis.
• Infection.
• Cerebrospinal fluid leak.
• Bleeding.
• Hormone changes.

What can I expect if I have Rathke’s cleft cyst?

If you know you have Rathke’s cleft cyst, you should monitor yourself for any symptoms it might cause, like vision changes or issues caused by hormone imbalances. Providers often recommend follow-up MRIs to monitor the cyst.

If you’ve had surgery, you’ll probably also need follow-up MRIs to watch for it coming back (recurrence). You might need another surgery if the cyst comes back and causes symptoms again.

How fast do Rathke’s cleft cysts grow?

As most people don’t develop symptoms of Rathke’s cleft cyst until they’re 30 or older, experts think they the cysts grow very slowly. Many cysts that are monitored with MRIs don’t grow or can shrink spontaneously. However, some can grow faster or recur within a few years of surgery.

Can Rathke’s cleft cysts be cancerous?

No. Rathke’s cleft cysts are noncancerous (benign). If you have a surgery report or pathology report, your provider may note a change in cells called squamous metaplasia. This sounds scary, but it isn’t cancer and doesn’t become cancer.

How successful is surgery for Rathke’s cleft cyst?

Studies suggest most people experience symptom improvement after surgery. Recurrence rates vary, but a small number of people have the cyst come back after surgery. Ask your provider about the possible benefits and risks of surgery.

When should I see my healthcare provider?

Rathke’s cleft cysts can cause a variety of symptoms. If you know you have a cyst, ask your healthcare provider what symptoms you should look out for and when you should seek care for symptoms.

When should I go to the ER?

Go to the emergency room if you experience:

• Sudden or severe vision changes.
• Severe headache.
• Confusion or altered mental state.

What questions should I ask my doctor?

If you have Rathke’s cleft cyst, you might wonder how you developed your cyst and what issues you might have. Here are some questions you might want to ask:

• Is this benign?
• Can the cyst become a cancerous tumor?
• How large is the cyst?
• Will I need surgery to remove the cyst?
• What symptoms should I look out for?
• What’s the best way to monitor the cyst?
• When should I follow up with you?