University of Kentucky physicians restore college student’s vision following ‘false brain tumor’

(image Credit: AdobeStock/wolterke)

What started as a headache led Eastern Kentucky University student Madison Carlisle down a path that she never imagined her semester would follow.

In a University of Kentucky news release, she noted that the headache and vision issues started a week before fall break.¹

“My vision was starting to act up, there were times it was like I was seeing two of everything,” Carlisle said in the release. “I thought it was likely a migraine and if I went to the doctor they would say the same thing. So, I took some medicine and I was really just trying to power through and get all my schoolwork done before the break.”

Carlisle returned home to Frankfort, Kentucky, for the break after she finished her assignments and courses, and was excited about the prospects of spending some time away and getting ready for the rest of the semester.

Once home, the headache that she arrived with would not let up and her vision got worse. She decided to go to her eye doctor for an examination. Imaging at the office detected a swollen optic nerve, and she was encouraged to go to the local emergency department.

At the emergency department of a local hospital, Carlisle underwent a spinal tap and her vision returned to normal … for a couple of hours.

Carlisle then started to get sick and could not keep any food down.

“Then my vision started getting worse again,” she said. “They then directed us to get to UK. So, within two days of me getting my spinal tap, I was headed to Lexington.”

Carlisle went to the University of Kentucky Albert B. Chandler Hospital Emergency Department,² where she was assessed. They checked the site of the spinal tap for infection and ultimately determined that she needed to be examined by a neuro-ophthalmology and sent her home with some medication until her appointment with a specialist.

“I looked at the referral and saw that there was a mention of this condition called idiopathic intracranial hypertension,” said Mangayarkarasi Thandampallayam, MD, a neuro-ophthalmologist with UK HealthCare’s Kentucky Neuroscience Institute.³

Idiopathic intracranial hypertension (IIH) is a conduction caused by an excess of cerebrospinal fluid that builds up in the skull and creates pressure. Also known as a pseudotumor cerebri – which literally translates to “false brain tumor.”

According to the news release, Carlisle had what is known as fulminant IIH (FIH), a subtype of IIH that occurs in 2% to 3% of patients with IIH and leads to rapidly progressive vision loss within 1 month of the symptoms beginning. Patients presenting with symptoms like those Carlisle exhibited are at high risk for permanent vision loss and are in need of quick medical diagnosis and treatment.¹

“We always check what the pressure is inside the brain,” Thandampallayam in the news release. “I saw the number was 54, and normally it should be less than 25. So when I saw this number double, I knew we needed to get her in quickly.”

By this point, the fall break had ended, and as a driven college student, Carlisle was worried about missing class and being away from her schoolwork. Thandampallayam outlined the important need for her to be treated for the condition right away.

Thandampallayam pointed out that with her vision already deteriorating, Carlisle risked permanent vision loss.

“But that obviously is something that a healthy college-age person is not really thinking about or fully understands,’ Thandampallayam said. “The threat that she might lose vision for her entire life was real.”

EKU student Madison Carlisle experienced rapid vision loss until a team of physicians at UK HealthCare was able to unravel the mystery of her ‘false brain tumor.’ (Image credit: University of Kentucky/Mark Cornelison)

Within days, Carlisle was back in Lexington, and was admitted to the hospital.

It turned out that the severity of the swelling and impending vision loss, Carlisle required more than medication and a multidisciplinary team effort was needed. This included Thandampallayam, neurologists, neurosurgeons, OB-GYNs and oculoplastic surgeon Peter Timoney, MD.

“Dr. Timoney agreed to perform a procedure known as an optic nerve sheath fenestration, where they make a small cut that releases the pressure on the optic nerve,” Thandampallayam said in the release. “The decompression was needed as her optic nerve looked like as if somebody was strangulating it and it was affecting the blood circulation of the optic nerve.”

The procedure was performed on both eyes, and Carlisle required a few other interventions by the multidisciplinary team assembled in an effort to save her vision. Zain Guduru, MD, was the neurologist on duty when Carlisle was admitted to the hospital.¹

“He really acted swiftly and worked closely with the neurosurgery team to get the lumbar drain underway while waiting for the optic nerve sheath fenestration,” Thandampallayam pointed out.

According to the news release, many individuals diagnosed with IIH are treated with medications and weight loss. Fewer than 1 out of 10 people with IIH will require surgical treatment. Surgery will be required if treatment and weight loss do not resolve the loss of vision. Carlisle was experiencing a rapid loss of vision as a result of high pressure from the circulating cerebrospinal fluid.

While Justin Fraser, M., director of Cerebrovascular Surgery and Neuro-Interventional Radiology was out of town at the time, because of the serious threat of blindness, he communicated with the rest of the neurosurgery team and chief residents giving them the green light to go ahead with the procedure under the guidance of Farhan Mirza, MD, and Shivani Pahwa, MD.¹

A lumbar drain was successfully placed by the team to ease the pressure. It remained in place for 2 days, and it marked the first time the procedure was performed at UK HealthCare to treat this condition. The next day, Carlisle had a significant improvement in her vision.

“The neurosurgery team and the rest of us were thrilled at the improvement,” Thandampallayam pointed out. “We were making progress.”

Another factor in the ongoing situation was a birth control implant in Carlisle’s arm, and Thandampallayam pointed out that type of birth control can contribute to the condition.

“Over the weekend, we were able to get the gynecology team in to remove the implant,” Thandampallayam said. “It all came together in an amazing way. For a stroke patient we often say, ‘time is brain;’ we have a similar mindset when it comes to this condition, ‘time is vision.’ If we act urgently, we often can save the patient’s vision.”

Following insertion of the lumbar drain and the removal of the birth control implant, Carlisle’s vision started to stabilize. The team then could perform the optic nerve sheath fenestration. After that, the long recovery process began and the 19-year-old college student was forced to withdraw from all of her courses for the fall semester.

In the wake of all of the medical issues she endured beginning in October, Carlisle was able to start the spring semester as scheduled.

“I still have some slight issues peripherally and some scar tissue, but I was cleared to drive and return to normal activities … which is amazing,” Carlisle said in the news release.

The setback was only temporary as Carlisle finished the school year strong and has continued her pace. A psychology major, she is working 2 jobs, including an internship with the state of Kentucky at the Cabinet for Health and Family Services.

“I was really moved by Madison,” said Thandampallayam. “She was very dedicated to her education and was also working a part-time job at that time. In that moment, though, she was forced to face the reality of life without her vision. Thanks to all of our experts who really helped save her vision and give her life back.”

According to the news release. IIH is relatively common in Kentucky, particularly in young females who are overweight. While it can cause headaches and vision loss over time, it is extremely rare for it to cause rapid vision loss like what Carlisle experienced. Birth control hormones have been linked to the condition, although it is rare.

Thandampallayam was driven to act urgently based on an experience during her fellowship, when she saw a similar patient also in her 20s.

“She was the mother of a young child and really had a lasting impact on me. Her optic nerve had already atrophied and there was no way we could save her vision,” Thandampallayam recounted. “Thankfully, for Carlisle, we saw her at just the right time.”

Thandampallayam added that timing was also key in Carlisle’s case.

“We are so fortunate to have everyone here in one place,” she said. “This was the epitome of a team effort. Special thanks to my neuro-ophthalmology colleague Dr. Sudhakar, dedicated neurology residents, neurosurgery residents and the entire team involved with the care of Madison.”

The efforts of the team also have ensured that Carlisle can clearly see the goals she has set for her academic career.

“I’m aiming to get my doctorate in psychology,” she concluded in the news release. “I want to be a child and family psychologist. It is a while from now, but that is the hope and the want. I’m thankful to be back on the road to achieving that.”

Reference:

1. UK physicians restore college student’s vision after “false brain tumor.” EurekAlert! Published 2024. Accessed August 15, 2024. https://www.eurekalert.org/news-releases/1054302

2. Chandler Emergency Department. UK HealthCare. Published 2021. Accessed August 15, 2024. https://ukhealthcare.uky.edu/hospitals-clinics/chandler-emergency-department

3. Kentucky Neuroscience Institute. UK HealthCare. Published 2019. Accessed August 15, 2024. https://ukhealthcare.uky.edu/kentucky-neuroscience-institute