‘I had a brain tumour, but doctors thought it was epilepsy, panic attacks’

"I am a nurse. I loved taking care of people from a young age. I can't point out when but by the time I was in high school, aged 15, I knew I wanted to pursue something related to healthcare in the future.

My journey through illness started last year in January. I was still not a registered nurse then. I was in my final year of internship at the Adventist University of Central Africa in Kigali, where I pursued Bachelors of Science in Nursing and Midwifery. I started feeling ill and having symptoms I had never had before. They started off mildly as headaches then later progressed to fainting before advancing to seizures and convulsions.

They were symptoms that came to point at issues in the brain. I had never had such issues before and as a nurse, I tried to self-diagnose, all the while telling myself it would pass and believing that it was caused by fatigue from overworking. I was having these episodes at school and at work, but I did not tell my family because I did not want to stress them. My friend, however, revealed it to my sister, who informed my other family members.

They insisted that I needed to see a doctor. I actually knew I needed to see a doctor, but I didn’t want to because at the back of my mind, I was also scared of what they were going to tell me.

Soon after, I threw in the towel and went for my first consultation, where the doctor ordered a CT scan. According to the doctor’s diagnosis, I had a concussion. He asked me whether I had hit my head and I said no. I had not had any major falls that I could remember.

He prescribed some pills, told me to go home and monitor my progress, adding that the symptoms would disappear on their own. However, things didn’t get any better.

After that, I kept having more consultations and saw more than eight specialists, mostly neurologists and neurosurgeons in Nairobi, but I didn’t get a convincing answer. Later on, I would be told that I had a congenital illness, but I had doubts on that and kept questioning why it would manifest late. They said that sometimes that happens, but I was still in doubt. 

Epilepsy came up a couple of times and I was even given medication for it regularly. As time passed, the condition got many labels, where some doctors called it panic attacks and others simply tagged it as women’s issues brought about by menstruation.

The symptoms got worse as I deteriorated emotionally, and with my family involved, they were getting stressed out. I remember that most times some doctors tried while others didn’t even give it a second thought. I remember one incident that stuck with me, where I went to this prominent private hospital in Nairobi. I had an appointment with a neurologist at 2pm, but he arrived at 4pm. His lateness already was an issue.

Accompanied by my sister, we went to his office to explain what I was going through and thought that maybe he would take time to examine me, but we were left astonished when he was through in less than five minutes. He told us to go home, but then told my sister to be recording me when I have the episodes so he could establish whether there was a pattern.

He prescribed some medication and what was even more worrying to me was his response when I asked whether the drugs would help. He said “they might help or they might not. Just go and take it.”

He dismissed us. My sister, dissatisfied, went back by herself to his office to inquire more, but came back out almost immediately, with no more information.

After that we realised we weren’t getting substantial help. By then, we had gone to most hospitals that we could trust. This was about eight high profile hospitals and we also visited neurospecialists in private practice. We still could not get a consistent diagnosis.

Some were offering treatment; some were close to my actual diagnosis. There was this neurosurgeon who was a bit friendly, and he got something close. He told us that I had cavernoma. This is a cluster of abnormal blood vessels, usually found in the brain and spinal cord. He explained to us that surgery was an option. But we wanted a second and third opinion and without a firm diagnosis, which is the basis for treatment, we couldn’t go on.

Around that time, about six months after the onset of the symptoms, my sister met a friend of hers who was a doctor. He advised her to look into options outside the country. He referred us to a hospital in New Delhi, India, to a neurosurgeon he knew.

Soon after, our family came together and after several gatherings to mobilise resources, we travelled to India for treatment.

The diagnosis

On the first consultation, the chief surgeon diagnosed me with a right frontal lobe brain tumour based on Magnetic Resonance Imaging (MRI) I carried from Kenya. We had to do a follow-up MRI at their establishment to ascertain the same. We also did blood tests and Covid-19 tests, spending at least five days consulting with the neurosurgery team. 

He took his time, explained clearly and we all understood. We were all convinced. He actually used the imaging I had brought from Kenya to diagnose me and said to confirm this, we do another one. The imaging was the same, but the interpretation was different.

On June 20, 2022, I was wheeled into theatre for a seven-hour craniotomy. After surgery, I never experienced the previous symptoms. I had challenges with balance and weakness that resolved soon after. There were no lasting effects. I was in India for almost a month and then came back home in one piece and fully recovered.

Though I am fully recovered, I can’t help but think that this is a procedure that could have been done in Kenya. I believe that this was a diagnosis that could have been made by Kenyan doctors. I probably just fell into the hands of negligent medical staff.

That is why early this year, I started thinking about other people who may have gone through this and thus started a talk show. It features people who have gone through issues such as misdiagnosis and other malpractices within our health system. Some patients are not as lucky as others, others do not have funds to seek as many opinions as they would like, some may not even get that chance as the disease may progress rapidly and by the time they are noticing that they are not getting help, it is already too late.

Through Nguvu collective accelerator programme, I started a petition to ask for legislation for establishment of a patients’ rights committees in healthcare institutions in Kenya.

I also wrote to Health Cabinet Secretary Susan Nakhumicha to put in place mechanisms for setting up of patient rights committees in all health institutions and to mobilise county governments to establish the committees in their respective counties.

Soon after, I met with her personal assistant and discussed the proposed petition. She advised and referred me to the Kenya Health Professions Oversight Authority and other key decision makers. We are expected to report back to the Health CS' office.

The committees can consist of a variety of people to avoid bias. They can do advocacy for patients’ rights, educate patients about their rights, what to expect, and where to report when their needs are not met. They will also review policies and regulations of that institution, identify high risk areas and implement changes, and also serve as a place for reporting and resolving cases and if need be, accelerate or bring to attention cases to the Kenya Medical Practitioners and Dentists Council . If this becomes a law, every institution will follow through, especially if a budget is also allocated to the same.

What is a misdiagnosis?

A misdiagnosis refers to a situation where a medical professional offers a diagnosis of a disease based on the symptoms they know about and tests performed, but the diagnosis ends up being incorrect, and the condition is actually something else.

Pius Nyakundi, the secretary general of Kenya National Union of Medical Laboratory Officers, tells Healthy Nation that the union recorded a total of 2,430 cases of misdiagnosis in the past year alone. He attributes the same to tests being conducted by people who are not qualified to test.

In 2002, the union stated that three out of 10 patients in Kenya get the wrong diagnosis or treatment. This, they said, resulted from poor quality testing, lack of capacity of medical laboratory officers to offer quality services and failure of the Pharmacy and Poisons Board to validate medical equipment.

According to Dr David Kariuki, the CEO of the Kenya Medical Practitioners and Dentists Council(KMPDC), the council received a total of 110 medical complaints within the past year inclusive of misdiagnosis cases, whose numbers not definite. He notes that the council can only determine a misdiagnosis case following a complaint and investigation.

“The most common factor that contributes to misdiagnosis is visiting a health care provider that is not qualified to provide that kind of service. Not every person you find in a hospital or clinic has the capacity to make a diagnosis. If you go to a health facility where it undertakes practice that is outside their scope, you may end up with an element of misdiagnosis,” he says.

“A dispensary, for example, would not be able to diagnose, say cancer, to the level at which it should. But it doesn’t mean they can’t diagnose a sore throat. It also doesn’t mean it’s not a legitimate clinic, but that its scope cannot allow it to make such a diagnosis. Where they treat minor ailments and cannot manage it, they must refer a patient to a higher level facility,” he explains.

Dr Kairuki tells Healthy Nation that a misdiagnosis may also result from incomplete investigations. 

“As a doctor, I can tell you to do a CT scan, but you are the one to pay for it. So if you go and find that the test is expensive, you may decide to just take the pills. You got the advice but did not follow through. It can also be because of lack of follow-up, where a patient discontinues intake of drugs without knowing whether the doctor in question was planning to conduct further tests,” he says.

He explains that the council holds patient safety dear and has stipulated disciplinary procedures for those who act out of the known standard of care. Such persons would then be liable for education or discipline.

“I urge Kenyans to confirm the authenticity of people who are treating them, whether they are qualified, licensed or registered. If you get your doctor’s name, send a text to 20547, and it will tell you whether that doctor is registered at our council.”

According to Joab Ogallo, the chair of Confraternity of Patients Kenya, seven complaints were lodged by patients last year involving both public and private health facilities. Most cases were reported in rural areas.

“This could be attributable to lack of diagnostic equipment in the lab and radiology departments as well as incompetency of the service providers. Though there are some diseases common in particular geographical areas, respiratory illnesses and gastrointestinal diseases are the most misdiagnosed conditions, with men leading in reported cases. This is attributed to the fact that throughout treatment, women are usually more inquisitive.”

In December last year, the organisation proposed the creation of a National Patients Authority to the Senate Committee on Health, even as they sensitise health care workers on patients’ safety and importance of seeking different medical opinions.

According to the World Health Organisation (WHO), a misdiagnosis can result in patient harm due to wrong or delayed testing or treatment. 

WHO explains that a diagnostic error emerges when a diagnosis is missed (disease missed despite symptoms), inappropriately delayed (abnormal test result suggestive of disease, but no one has told the patient) or is wrong (patients told they have one diagnosis when there is evidence of another). 

These errors are attributed to limited access to high quality care as a result of lack of money, insufficient competent health care professionals, poor teamwork, lack of learning, limited diagnostic tests and suboptimal training of health care providers."

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