In August 2023, Maria Strouble noticed that the pupil of one eye was unusually large, making her vision blurry. But when her primary care doctor recommended that she go to the emergency room, she resisted.
“I wasn’t having any other major symptoms, and I felt fine,” says the bubbly 44-year-old mother of four and grandmother of three from Weirton, West Virginia. “I’m stubborn, and I’m busy, and I felt dumb going to the ER.”
Nevertheless, she reluctantly went to the hospital to get checked out — and it’s a good thing she did. The ER doctor ordered a CT scan and then an MRI.
“By the time he came in to talk to me, he had consulted with a neuro-ophthalmologist in Pittsburgh," she says. "I apparently had a rare condition called ‘tonic pupil,’ and he recommended seeing an eye specialist.”
But what the doctor said next shocked Maria.
“He also told me they found a colloid cyst in my brain but acted like it was no big deal,” Maria remarked. “He said, ‘It’s just a benign growth, like a cyst anywhere else in your body.’”
Looking for Answers
Maria, who worked as a teacher’s aide at a school for children with disabilities, began researching colloid cysts immediately.
“I read the chart from the ER and started Googling. Then I found a few colloid cyst support groups on Facebook,” she says.
She learned that a colloid cyst is a rare, mucus-like tumor of the brain. It usually appears near the brain’s center. That’s the point where the lateral ventricles (two of the brain’s fluid chambers) drain into the third ventricle.
Doctors don't know what causes colloid cysts but think they may develop in utero. In some people, they never get bigger or cause problems. In others, they do.
Though a colloid cyst isn’t cancerous, it can obstruct the healthy flow of fluid in the brain. That can lead to hydrocephalus, an abnormal buildup of cerebrospinal fluid in the ventricles. The fluid puts pressure on the tissues of the brain, potentially causing headaches, memory loss, poor balance, and personality changes.
Maria began connecting the dots with some other issues she’d been experiencing.
“I’d been having some headaches, but I attributed them to my severe asthma,” she says. “I was also having trouble with my short-term memory; my husband and kids told me that I kept repeating myself.”
Finding Expert Help
Maria’s internet search turned up Constantinos Hadjipanayis, MD, PhD, a UPMC neurosurgeon in Pittsburgh. She had read glowing reviews online but still wasn’t prepared for the attention she received when she reached out to him.
“I emailed him at 11 p.m. one night and within five minutes he answered me,” she says. “I was shocked. In fact, I emailed back and asked him why he responded so late at night!”
Within days, Maria had an appointment with Dr. Hadjipanayis and his team at UPMC Presbyterian.
“We went over everything I’d been told in the ER. He looked at my scans, asked about my symptoms, and explained that although it was a tumor, it wasn’t cancerous.”
Maria asked if she could see the CT and MRI scans. “At that point, it started to feel more real. I was glad it wasn’t cancer, but any growth in your brain is scary — it’s taking up precious real estate.”
At this point, the cyst was 7 millimeters wide and didn't cause any problems that needed immediate intervention. Dr. Hadjipanayis recommended that Maria keep a journal for several months, recording her headaches, vision problems, and any memory issues. The journal helped pinpoint which symptoms stemmed from the cyst and which may have been from other causes, like her asthma.
Follow-up and Surgery
Maria diligently kept track of her symptoms during the fall of 2023 and noticed they were getting more frequent and intense. After three months, she saw Dr. Hadjipanayis for a follow-up CT scan.
The cyst had actually grown from several millimeters in diameter in that short time.
“It was starting to press on what’s called the memory bundle of the brain,” Maria says. “The ventricles had started to enlarge, meaning there was the potential for hydrocephalus.”
Dr. Hadjipanayis suggested surgery but told Maria it was her choice.
“It wasn’t an emergency yet, but I didn’t want it to get to that point,” she added. “I jokingly told Dr. H he could take it out if he didn’t remove any lyrics from my favorite ’90s pop songs!”
On Jan. 23, 2024, Maria underwent a procedure at UPMC Presbyterian to remove the cyst. The surgery was purely endoscopic, or minimally invasive, with a small 2 cm incision just above Maria’s right forehead. Still, having brain surgery is unnerving.
“I’ve never been so scared in my life as the 20 to 30 minutes waiting to be taken back for surgery,” Maria says. “I’ve had surgery before, but nothing like this.”
Recovery
After the procedure, Maria woke up in the ICU.
“The only issue was that I tried to sit up too quickly and felt really sick for a while,” she remembers.
But overall, she recovered well and ended up going home only two days after the surgery.
After getting home, Maria’s main problem was wanting to do too much too soon.
“It kind of messes with your mind,” she says. “You see a small incision and think it’s no big deal, but it’s major surgery, and you have to take recovery slowly.”
A large part of that recovery was simply resting in order for healing of the brain to occur.
“I was sleeping through the night, then taking three to four naps during the day.”
Maria didn't notice an immediate improvement, but her symptoms diminished as the weeks went on. Soon, she was able to become more active, helping to throw a baby shower for one daughter and planning a wedding for another.
Since the surgery, Maria has had continuity of care follow-up video appointments with Dr. Hadjipanayis. She'll have a repeat CT scan in August to make sure the cyst hasn’t returned. (As long as the surgery completely removed the entire cyst including the capsule and contents, there’s usually no follow-up treatment for a colloid cyst.)
Maria continues to see an eye doctor for her tonic pupil, which turned out to be unrelated to the colloid cyst.
Her advice for anyone who has symptoms of a brain cyst: Make an appointment with a specialist.
“One thing that sticks out from my experience is that a lot of doctors aren’t familiar with colloid cysts,” she warns. “So it’s important to be proactive.”
She adds that her three grandchildren are her entire world and the reason she’s taken her health seriously in recent years.
Learn more about Dr. Hadjipanayis and the UPMC Center for Image-Guided Neurosurgery.