Is my headache coming from my soul?

Serious soul searching can give anybody a headache, but when a young woman asked me that, I was taken aback in my neurosurgery clinic. Huh? I said. Do you know René Descartes? The pineal gland is the “seat of the soul.” Well, my pineal gland has a cyst and is more like the “seat of my misery.” It turns out this eloquent young woman in her early 20s was a philosophy major and had been diagnosed with a pineal cyst. She had been diagnosed with migraine headaches since she was an early teen. However, about two years ago, she had developed this severe pain and pressure between her eyes. Then started a slew of weird symptoms like the lights were always too bright and the TV put on by her roommates was always too loud. After multiple consultations with headaches specialists and neurologists, an MRI of the brain was ordered. A 1.2 cm pineal cyst was seen, and now she was in my clinic asking if her headaches were from this small cyst.

Red arrow showing the location of the pineal gland.

“Before I give you my opinion, let me examine you,” I said. Her neurological exam was normal except that she said it hurt to look up and that sometimes she had double vision. I showed her the MRI and pointed out how the cyst appeared to be pushing on the back of her brainstem. Yes! I concluded, I believe your headaches and “misery” is coming from the seat of your soul. I explained to her the complicated neurosurgery needed to remove the cyst. She was in tears, and I thought I must have scared her with my detailed description of the operation. “I am not scared,” she said, “I am relieved! Last two years, I have been thinking I was going mad with these headaches and weird symptoms. It seemed nobody believed me, and no one had any answers.” After a brief pause and without hesitation, she asked, “When can you do the operation?”

The pineal gland helps regulate our sleep-wake cycles (circadian rhythm) by secreting melatonin. Pineal cysts are common and are present in about 1 to 2 percent of the general population. They are found most commonly in young women. The majority of them do not produce any symptoms. However, in a minority of patients, they can cause quite debilitating symptoms. Individuals with pineal cysts are twice as likely to complain of headaches than people who don’t have cysts.

Most neurosurgeons agree if there is fluid build-up in the brain (hydrocephalus) or if patients have trouble moving their eyes up (Parinaud syndrome), surgery should be recommended. However, a very small number of patients develop fluid build-up or Parinaud syndrome, and most have what are deemed to be “non-specific” symptoms. Most neurosurgeons agree that surgery should be offered to “symptomatic” patients, but there is no consensus on the constellation of symptoms that define “symptomatic” pineal cysts. Common symptoms include headache (classically frontal between the eyes), fatigue, sleep disturbances, vertigo, light and sound sensitivity, pain on upward gaze and double vision. In my experience, a careful detailed history of the classic and non-classic symptoms and just listening to the patient usually yields an answer. An MRI showing that the cyst is pushing on the brainstem can also help in the decision making. Most patients that are symptomatic have cysts that are 1 cm or larger and I consider cysts that are 5 cm or smaller as normal.

It is important to rule out other causes of headaches and patients are typically offered surgery when they have failed medical management. Once the pineal cyst has been deemed symptomatic, microsurgical removal of the cyst is the only truly effective treatment. Studies have shown very good results with resolution or significant improvement in headache and non-headache symptoms in well-selected patients. For example, the largest prospective study, 95 percent of patients reported some improvement in their symptoms and almost 50 percent were symptom-free after surgery.

Two main surgical approaches are used to remove pineal cysts: The supra-cerebellar infratentorial approach and the occipital trans-tentorial approach. The choice of approach depends on patient and cyst anatomy and surgeon preference. During surgery, the cyst looks greenish and is filled with fluid. Complication rates are low in experienced surgeons’ hands, and my patients typically stay in the hospital for 1 to 2 nights. Most patients can return to work in about two weeks.

Chirag Patil is a neurosurgeon.

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