After 10 Years of Migraines, a 26 Year Old Father Learns a Golf Ball Sized Brain Tumor Was the Cause — Now He’s Adjusting to Life After Surgery

“I was fed up with my headaches—they were getting worse and worse. I wanted to cry with the pain,” Taylor said, according to NBC News.

An MRI ordered during a doctor’s visit revealed the source: a large haemangioblastoma, a rare, benign but highly vascular brain tumor.

WATCH: What To Expect With MRI & CT Scan

According to the National Center for Advancing Translational Sciences, hemangioblastomas account for only about two percent of brain tumors and can cause symptoms such as headaches, weakness, sensory changes, and problems with balance and coordination.

The American Society of Clinical Oncology (ASCO) notes that brain tumors—benign or malignant—make up the vast majority of primary central nervous system tumors, with symptoms and treatment varying widely depending on their type and location.

Doctors warned Taylor that without emergency surgery, he had only days to live. “I thought I was going to die,” he said.

He underwent brain surgery within days of his diagnosis, but complications afterward required a second procedure. Recovery brought its own challenges for Taylor and his family.

His partner, Nia Jones, who cared for him throughout, recalls how difficult those early days were. After surgery, she says, Luke became “erratic.”

“He was slurring his words and couldn’t open his eyes,” Jones said.

Experts emphasize the importance of understanding what happens during and after brain surgery.

WATCH: Key Questions Every Glioma Patient Should Ask After Surgery

Dr. Natasha Robinette, a neuroradiologist at Karmanos Cancer Center, encourages patients to ask key questions, including how much of the tumor was removed, whether any visible tumor remains, and how the results will shape follow‑up treatment.

The tumor’s location often determines whether surgeons can remove it completely or whether a more limited operation—or even just a biopsy—is safest.

For patients whose tumors are successfully removed, close monitoring may be the next step.

“If we start to see changes, then we know to act with something a little bit more aggressive, like chemotherapy or radiation,” explains Dr. Ashley Ghiaseddin, a neuro‑oncologist at University of Florida Health.

Today, Taylor is more stable, but his journey isn’t over. He continues to undergo regular scans to watch for any signs of recurrence—a risk influenced by factors such as how much of the tumor was removed, his age, and the tumor’s specific biology.

Inside Brain Tumor Surgery and Recovery: What Patients Can Expect

Surgery to remove a brain tumor is delicate by nature, and every movement inside the skull must balance precision with safety.

“We take off the bone overlaying the area we need to get to. We open the little envelope around the brain called the dura, and then we move through the brain tissue to get to where the tumor is to try to cut out as much as we can safely, without hurting the patient’s function or other important things like big blood vessels that can cause things like a stroke,” explains board-certified neurosurgeon at Emory University School of Medicine Dr. Kimberly Hoang.

Following surgery, patients are closely monitored and often receive radiation to prevent tumor regrowth—particularly in cases where multiple tumors or metastatic disease are involved.

“Because many patients can have more than one brain tumor or metastasis from their cancer, it was not reasonable to think about surgery for them,” Dr. Hoang adds. “They also get radiation for those spots as well, to try to keep those tumors from growing or shrink them down.”

Treatment Advancements & the Challenge of the Blood-Brain Barrier

Chemotherapy, immunotherapy, and targeted therapies have long been effective in treating cancer throughout the body. But the brain’s natural defense — the blood-brain barrier — makes these treatments less effective when it comes to brain tumors.

This barrier is “a network of blood vessels and tissue…made up of closely spaced cells and helps keep harmful substances from reaching the brain,” according to the National Cancer Institute.

Still, Dr. Hoang notes that recent advancements in drug design are beginning to improve treatment efficacy in the brain.

Understanding Side Effects of Brain Tumor Treatment

Side effects vary depending on the tumor’s size, location, and number of lesions present.

“Radiation treatment can cause swelling in the tumor as the tumor ‘dies,’ and the surrounding tissue can also become swollen as the treatment takes effect,” Dr. Krishanthan Vigneswaran, a neurosurgeon with UT Health Houston and Memorial Hermann, tells SurvivorNet.

“This swelling can cause symptoms of headache, nausea, vomiting, and neurological loss of function…Surgical resection can also induce swelling, but this is more transient.”

Tumor location often determines what symptoms emerge:

“If it’s near your movement area, movement on one side of the body can be affected. If it’s near your speech area, your speech and the way you form words and express them can be affected,” Dr. Hoang explains.

She also notes brain surgery tends to be less painful than other types — like spinal or abdominal — due to fewer nerves in the surgical area.

Recovery & Long-Term Monitoring

Many experts recommend joining a support group — especially one with people who’ve undergone similar procedures. Their lived experience can offer comfort and practical advice.

“Support groups can be incredibly helpful to patients and are commonly offered at major cancer centers and hospitals,” says Dr. Jennifer Moliterno, Chief of Neurosurgical Oncology at Yale Cancer Center.

Mental health professionals are also often part of the care team, helping patients manage the emotional effects of surgery, treatment, and recovery.

How Genetic Testing Can Make a Difference In Your Glioma Treatment Journey

Gliomas are a type of tumor that starts in the brain. They can range from slow-growing (low-grade) to more aggressive forms.

“Nowadays, with not only brain cancers, but cancers in general, there has been a lot that’s been discovered about how different mutations in the tumor actually affect the behavior. Also, there are a number of mutations for which we have drugs that can target those mutations,” Dr. David Peereboom, an oncologist at the Cleveland Clinic Cancer Center in Ohio, tells SurvivorNet.

Biomarkers are essentially a tumor’s “fingerprints.” By studying these fingerprints, doctors can predict what treatments may be most effective and least toxic for you.

“The way to discover that [biomarker] is to do testing,” Dr. Peereboom explains. “The most helpful testing is called Next Generation Sequencing. What that does is it looks at all the DNA in the tumor, and the DNA is analyzed, and there are parts of DNA that may be abnormal or mutated.”

This testing might be performed using tissue obtained during a biopsy, surgery, or a blood test.

“There are a handful of those mutations that are called driver mutations,” Dr. Peereboom adds. “Driver mutations, as the name implies, are mutations that actually drive the behavior of the cancer. And for a handful of those, they’re actually, nowadays, there are some drugs that will target those mutations.”

How is Molecular Testing Done?

Molecular testing is typically performed on a sample of tumor tissue. This tissue is obtained from either surgery or a biopsy. Pathologists conduct the testing; these doctors are specially trained to study the characteristics of tumor tissues.

Molecular testing is widely available throughout the country, making it accessible to most patients diagnosed with gliomas.

What Types of Molecular Testing Are There?

Several molecular testing techniques are used on tissue samples. One method is antibody staining, where pathologists “stain the tumor with an antibody to look for the presence of the IDH mutant protein,” Dr. Alexandra Miller, Director of the Neuro-Oncology Division at NYU Langone Health, explains. Tumors without the mutation will not be visible with the stain. However, tumors that have the IDH mutation will stain or show a color that pathologists can recognize. This is a very common technique pathologists use for many tumor types.

WATCH: Understanding Molecular Testing for Glioma

Another method is molecular sequencing, which Dr. Miller explains is a process where doctors examine the DNA of the tumor cells to find specific changes or mutations in the genes. Both techniques can confirm whether the IDH mutation is present in the tumor cells.

Dr. Miller tells SurvivorNet that molecular testing “should be performed on every glioma.”

By determining whether a tumor carries the IDH mutation, doctors can offer FDA-approved targeted therapies like Vorasidenib, which Dr. Miller calls a “huge breakthrough” that slows the progression of the disease. This personalized approach marks an exciting advancement in the fight against gliomas, giving patients new hope and better treatment options.

WATCH: Who Benefits From Vorasidenib?

The FDA-approved drug Vorasidenib marks a major advance for patients with IDH-mutant gliomas—especially grade 2 tumors. In the INDIGO trial, a Phase 3 clinical trial, it reduced the risk of disease progression or death by 61% and extended progression-free survival (period with stable disease) from 11.1 to 27.7 months. For many patients, that represents a life-changing difference.

Better Understanding Brain Tumors

Brain tumors can impact a person’s cognitive function and overall well-being, depending largely on the tumor’s size, type, and specific location within the brain. When large enough, tumors may interfere with the central nervous system, pressing on nearby nerves, blood vessels, or tissues. This disruption may result in difficulties with coordination, balance, or mobility.

WATCH: Hope for Glioblastoma Research

While some brain tumors cause noticeable symptoms, others can go unnoticed for long periods. When symptoms do occur, they might include:

• Persistent headaches
• Difficulty speaking or processing thoughts
• Muscle weakness
• Behavioral or personality changes
• Vision disturbances
• Seizures
• Hearing loss
• Confusion
• Memory issues

Treatment Options for Brain Tumors

Treatment strategies for brain cancer depend on several variables, including the tumor’s size, type, grade, and location. Doctors may recommend:

• Surgery
• Radiation therapy
• Chemotherapy

Your medical team will help guide you based on your individual diagnosis. The prognosis—or outlook—depends on:

• Tumor type and growth rate
• Tumor location in the brain
• Presence of genetic mutations or abnormalities
• Whether the entire tumor can be removed
• The patient’s overall health

Types of Brain Tumors: Cancerous and Non-Cancerous

According to the National Cancer Institute, brain tumors can vary greatly in behavior. Some common non-cancerous (benign) types include:

• Chordomas: Slow-growing, often found near the spine’s base or where it meets the skull
• Craniopharyngiomas: Develop near the pituitary gland; rare and slow-growing
• Gangliocytomas: Form in the temporal lobe and affect the central nervous system
• Glomus jugulare: Rare and slow-growing
• Meningiomas: Typically grow on the brain’s outer protective layer (dura mater)
• Pineocytomas: Arise from the pineal gland near the brain’s center
• Pituitary adenomas: Located in the pituitary gland; generally slow-growing
• Schwannomas: Originate in Schwann cells, which insulate nerve fibers
• Acoustic neuromas (vestibular schwannomas): Impact on hearing and balance nerves

Common malignant (cancerous) brain tumors include:

• Gliomas: The most frequent and aggressive form of primary brain cancer
• Astrocytomas: Derived from star-shaped brain cells, with four growth grades
• Ependymomas: Graded based on aggressiveness
• Oligodendrogliomas: Can grow slowly (Grade 2) or aggressively (Grade 3)
• Medulloblastomas: Fast-growing and often found in children
• Glioblastomas: The most common and aggressive brain tumor in adults

Questions to Ask Your Doctor

If you or a loved one has been diagnosed with a glioma, be sure to discuss molecular testing with your treating team. Here are some questions to ask:

• Do you need both the tissue sample and blood samples for molecular testing?
• What specific mutations will you be testing for in my tumor?
• Do I have any genetic mutation that would change the course of my treatment?
• Am I eligible to receive targeted therapy? What about immunotherapy?
• Is there a clinical trial that would be relevant for me?

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