Colloid cysts, estimated to affect about three in every million people, are rare growths, typically located near the center of the brain, that are probably present at birth, according to Medscape. They account for fewer than 1 percent of brain tumors; most are found incidentally in adults between the ages of 30 and 60 and many don’t cause problems — or symptoms — unless they become too large and cause obstructive hydocephalus.
In Harms’s case, the pressure on his brain was so elevated, according to his medical records, that “the [cerebrospinal fluid] literally ejected from the top of the catheter in a projectile stream of approximately 6 cm high.”
Three days after the shunt procedure, Harms was transferred to Hopkins. He spent the next 15 days there, undergoing two surgeries, the first of which was aborted because the cyst could not be extracted safely.
The operation was particularly difficult, said neurosurgeon Daniele Rigamonti, who led a team of specialists, because Harms’s cyst, roughly the size of a marble, was hard and fibrous, and could not be removed easily. The surgical team had to balance a desire to excise the cyst with the risk of seriously damaging Harms’s memory.
“You have to be extremely careful,” said Rigamonti, a professor of neurosurgery, because one false move could “be a disaster.”
Rigamonti said he was not surprised that the doctors Harms consulted for more than a year before seeing a neurosurgeon missed the cyst; his most prominent symptoms — fatigue and headache — usually have much more prosaic causes.
“A colloid cyst is a fairly rare condition,” said Rigamonti, who has treated about 25 cases during his career. Harms said he wishes that his doctors had not been so quick to attribute his symptoms to stress or his ballooning weight, which was a sign of the metabolic problems caused by the cyst, and that they had ordered a CT scan earlier.
Although his surgery was a success, Harms’s recovery has taken longer than he anticipated. He subsequently developed seizures, which he manages with medication.
“The most difficult thing to adjust to is that my recovery is going to take a long time,” said Harms, who is still on track to complete his doctorate. “You don’t come out as spry — you reach a new normal.” His close friendship with another brain tumor patient and work with a colloid cyst survivors group on Facebook has been invaluable in his recovery, Harm added.
“A brain tumor is not a death sentence,” he said. “What is a death sentence is ignoring it. Don’t give up when you know something is wrong.”
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