Brain TB hidden for years: Woman survives after decade of misdiagnosis

For more than a decade, Vicky Birech lived with relentless headaches, unexplained illness, and repeated hospital visits that yielded no clear answers. She and her husband, Benjamin, moved from hospital to hospital across Baringo and Nakuru counties searching for a diagnosis, but each visit ended the same way: medication, but no lasting relief.

The first signs appeared in 2008, when Vicky began complaining of intermittent headaches and pain in one breast. The family took her to Eldama Ravine Sub-County Hospital, where she was treated and sent home. She recovered, and life returned to normal. But the relief was temporary.

In 2020, the headaches returned; this time accompanied by severe ear pain.

"The earache was so bad that she started leaning toward one side. We returned to hospital and eventually saw an ENT specialist at Ravine Hospital. She was given medication, but the symptoms persisted for months. Whenever the pain intensified, we would rush her back. The ear eventually healed, but she started hearing echoes," Benjamin says.

Also read: 'My battle with TB three times that saw my lobe removed'

In between, Benjamin relocated the family from their home in Torongo to Mogotio, hoping a change of climate might help. He bought land there and settled his family. But the move changed nothing.

The situation deteriorated dramatically in 2023. One day after attending a prayer day for Class Eight candidates, Vicky returned home complaining of a severe headache. Benjamin rushed her to a local clinic for painkillers, but they did not help.

They later went to Emining Health Centre, where tests revealed low blood levels. She was treated, but her condition failed to improve. After several return visits, doctors recommended a transfer. Vicky was admitted to Mogotio Sub-County Hospital for a week. By then, her symptoms had worsened significantly.

Her headaches were constant. She vomited frequently, could not eat, could barely walk, and suffered from extremely high fever. Doctors referred the family to Nakuru Hospital for a CT scan. The scan showed no problem in the brain. Four days later, her condition remained unchanged.

"She was weak, unable to eat or walk. Doctors advised us to return home and come back after 20 days. But Vicky continued deteriorating. She kept vomiting and could barely eat. My children and I became her caregivers at home. People in the village started saying she would die because she had suffered for too long," Benjamin exxplains. "Her body changed, she could not move, and her eyes lost strength. We feared we were losing her."

Before the 20 days elapsed, they rushed her back to Emining Health Centre, which again referred them to Mogotio and later back to Nakuru. Still, no answers.

Frustrated and desperate, Benjamin decided to return to Ravine. Vicky was admitted at Mercy Hospital for five days before being referred to Moi Teaching and Referral Hospital (MTRH) in Eldoret. The family spent Christmas in hospital. Despite numerous tests, doctors were still unable to determine what was wrong.

"When they could not find the problem, they asked us to go home and return for checkups, but I refused. I was worried about taking her home in that condition," he says.

With hospital bills rising and no diagnosis in sight, the family resorted to spending nights in the car and taking her for check-ups during the day. Eventually, the arrangement became unsustainable, and they returned home.

"By this time, Vicky had also begun experiencing vision problems. As 2025 began, another ENT review confirmed her ears were normal. Desperate for answers, someone advised us to try Tophill Hospital in Eldoret. There, doctors ordered a new round of tests, including CT scans, MRI imaging, ultrasounds, and spinal fluid analysis," says Benjamin.

Finally, the mystery was solved. Doctors diagnosed brain tuberculoma, a rare form of tuberculosis that forms lesions in the brain.

"The MRI showed a white substance running between the brain, dividing it into two halves," Benjamin explains.

Began walking

Doctors immediately started Vicky on anti-tuberculosis medication. They explained that the pain she had been feeling likely originated in the brain and travelled throughout her body. Surgery was considered as a possible option if medication failed.

"Just two days after starting treatment, the headache disappeared. For the first time in years, Vicky asked for food. It was our first success. Although she was still weak and unable to walk on her own, her condition improved steadily. I supported her as she slowly began walking again, first to the washroom and later around the hospital compound," says Benjamin.

After a few days, they started taking short walks. Within one week, she was strong enough to be discharged.

"She was sent home with a combination of drugs. At some point she was taking up to eight tablets at once," Benjamin says.

Doctors advised that she must continue the medication for one year. A follow-up MRI in December 2025 brought more good news: the abnormal white mass previously seen in her brain had cleared completely. Her blood levels, which had dropped during the illness, are now improving.

However, her hearing in the affected ear remains weak. Doctors say it is expected to improve gradually as she continues treatment.

Brain tuberculoma, notes Dr Kevin Ndede, a consultant physician based in Meru and Isiolo, is a form of tuberculosis that affects the brain, forming a mass-like lesion within brain tissue. Medically, this type of lesion is described as a space-occupying lesion because it occupies space inside the skull.

"The infection is usually acquired as a droplet infection, essentially airborne. If you are in a room with someone who has TB and they cough, the bacteria can remain floating in the air. If you breathe it in, the infection may establish itself in the lungs," he explains.

In some cases, however, the infection spreads beyond the lungs, penetrates blood vessels, enters the bloodstream, and travels to distant organs, including the brain. “One outcome is TB meningitis, an infection of the brain's coverings. Another is a tuberculoma, where the bacteria invade the brain tissue itself.”

Once the bacteria invade brain tissue, the immune system mounts a strong response. In the process, bacteria die, immune cells die, and brain cells may also die.

"These dead cells begin to accumulate in the affected area. The immune system then tries to contain the infection by walling off the area, usually forming a capsule that surrounds the infected tissue. Inside this capsule is a mixture of dead bacteria, immune cells, and damaged brain tissue. That part of the brain essentially becomes non-functional," he explains.

Also read: Kenya beats global TB targets, but aid cuts threaten to erase progress

As the body continues trying to repair the damage, scar tissue forms, reinforcing the capsule. The resulting structure is what doctors call a tuberculoma.

"So essentially, a tuberculoma is a mass within the brain made up of scar tissue, dead immune cells, damaged brain tissue, and the tuberculosis bacteria that caused the infection," he says.

Symptoms vary widely depending on where in the brain the lesion develops. Because different parts of the brain control different functions, the affected area determines what symptoms appear.

"One of the most common symptoms is headache. Because this is a mass inside the skull, it creates pressure within the brain, pressure that manifests as persistent headaches. 

Another frequent symptom is convulsions, which may occur because the mass presses on certain parts of the brain," says Dr Ndede.

He notes that patients may also experience weakness in specific parts of the body. If the tuberculoma affects areas that control muscle activity, a person may develop weakness in the arms, legs, or even muscles that control eye movement. In other cases, it may affect speech, vision, or hearing.

Despite its seriousness, brain tuberculoma is relatively uncommon. The true number is difficult to determine, says Dr Ndede, because many people may have small lesions that never cause symptoms.

"Very few people who get TB infection actually develop tuberculomas, probably less than five per cent of those diagnosed with tuberculosis. You might find someone with a small lesion that produces no symptoms, so they never seek care. As a result, it may remain undiagnosed," he explains.

Whether a tuberculoma becomes life-threatening depends largely on its size and location.

"If you have a very large tuberculoma in a vital part of the brain such as the brainstem, it can become life-threatening. The brainstem controls essential functions —breathing, heart rate, and blood pressure. If a tuberculoma affects this area, it can be extremely dangerous," says the doctor, adding that most cases are not fatal as many tuberculomas occur in other parts of the brain.

Dr Ndede reveals that diagnosis often happens when someone presents with symptoms such as persistent headaches or neurological deficits, prompting imaging tests including CT and MRI scans. Doctors may also run additional tests to confirm tuberculosis infection elsewhere in the body.

"It can remain hidden even for a lifetime if it does not cause symptoms. Sometimes it is discovered incidentally when someone undergoes brain imaging for another reason. This explains why some patients may live with the condition for more than a decade before it is discovered," he says.

"Since TB usually starts in the lungs, we may do a chest X-ray to check for lung infection. If the patient is producing sputum, that sample can be tested for TB bacteria. 

Another diagnostic method is lumbar puncture, where cerebrospinal fluid is taken from the lower back and analysed for TB bacteria. In some cases, doctors may take a tissue sample from the brain lesion itself through neurosurgery."

Treatment primarily involves anti-tuberculosis medication, with multiple antibiotics taken over several months.

"The treatment usually begins with an intensive phase lasting about two months, followed by a continuation phase lasting around four months. However, tuberculomas typically require longer treatment, often between nine and 12 months. This is because the antibiotics have difficulty penetrating the capsule that surrounds the infection," he explains.

High-risk groups

"If the tuberculoma is large and causing significant pressure on brain tissue, a neurosurgeon may remove it. Removing the mass can relieve pressure and improve symptoms," he adds.

Brain tuberculomas can affect anyone, including children, but they are more common in people with weakened immune systems.

"We see a higher risk in people living with HIV/Aids because their immune systems are compromised. Other high-risk groups include transplant recipients and patients taking medications that suppress the immune system," Dr Ndede says.

He urges people to seek medical attention if they experience persistent or worsening headaches.

"This condition is often silent, so clinicians must maintain a high index of suspicion. Persistent headaches should be investigated further. If someone has recurrent or worsening headaches, it is important to get brain imaging. Early detection allows us to identify conditions like tuberculomas and start treatment early, which leads to better outcomes," he concludes.

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