I just had to share my amazing story with you

For eight long years, this 36-year-old father-of-one lived in such agonising pain, he dreaded being touched, or worse, bumping into someone, because a dreadful pain would shoot up, threatening to consume him. Photo/VERAH OKEYO

What you need to know:

  • What would you do if your body ached so much, you were unable to sleep for more than an hour every night, for eight years?
  • Ask Joseph Muoria.

For eight long years, this 36-year-old father-of-one lived in such agonising pain, he dreaded being touched, or worse, bumping into someone, because a dreadful pain would shoot up, threatening to consume him. What made his situation even worse was the fact that even some of the country’s top doctors were unable to figure out what was causing the pain.

“I spent more than 3.6 million shillings, moving from hospital to hospital and doctor to doctor, but none was able to find out what I was suffering from,” he says.

The irony in Joseph’s story is that when he stumbled on a doctor who finally deciphered the puzzle that had become his illness, it took less than an hour to make a diagnosis, and only Sh21,000 to treat.

Joseph is sharing his story in the hope that should there be anyone else living with this excruciating condition that most doctors seem to be unfamiliar with, he or she will get help much faster than he did.

Who would have thought?

Joseph stretches out his left hand, and shows us his middle finger, which has a tiny scar at the tip. Underneath that scar was the source of his pain; a small tumour, which he would later learn is called glomus tumour, a rare benign growth found in the blood vessels.

The pain came knocking in early 2006. Joseph was helping a colleague lift a table at work. Suddenly, he felt a sharp pain, like a needle prick on the tip of his finger. His reaction was reflexive: He let go of the table immediately.

Curious, he looked at his finger, and seeing no cut, felt the edges of the table, looking for nails or any sharp object that may have pricked him. There was none.

“I brushed the pain off and did not give it any more thought,” he says.

Towards the end of August that year, whenever he carried something heavy using his left hand, the pain would shoot through his finger again.

“The pain on my finger was becoming intense with each passing day and was spreading to my back,” he says.

Then working at a reputed medical training institution in the country, he went to see one of the doctors there. This consultation would mark the beginning of a string of appointments with various doctors for eight years, with no help forthcoming

The ‘diagnosis’ from this first doctor calmed him down.

“He assured me that mine was a small problem that a few painkillers would cure and went ahead to prescribe tablets, which I diligently took.”

After two weeks, there was change, alright: The pain had increased. Whenever anything touched his left hand or left side of his back, he would cringe with pain, pain that took about 15 minutes to subside.

He went back to the same hospital and sought the help of a different doctor. He suggested an X-ray to see if there as a broken bone, but there was none. He was given more painkillers that he was to take for a month, but they did not help.

By then, the pain was no longer periodical; it had become a constant companion.

By early 2007, Joseph could not sit or sleep for more than an hour since he would be racked with pain whenever his back came into contact with anything.

He attended meetings at work standing and spent most of the night pacing around the house since he was unable to sit for long.

In August 2007, he decided to see a third doctor, who informed him that he could be suffering from gout. Joseph exhaled in relief, grateful that at least his illness had a name. The doctor advised him to stop eating meat for two months. 

Guilty as charged for his love of roasted red meat, Joseph readily took the advice and even extended his abstinence from meat by another two months, desperate to get his health back. Even after giving up meat, the pain persisted.

Most affected by this strange illness was his new wife, Esther, whom he had married in November 2006, when his problem was in its “teething stages”. Esther had been reduced to a spectator, watching her husband suffer, not knowing what to do to help him.

Help from a fourth doctor

Initially, she would refuse to go to bed, keeping him company in his forced insomnia, offering to make him special drinks or snacks to cheer him up.

However, when she started working, she had to sleep early, leaving him alone in his misery.

By then, his left hand ached so much, he could not even lift his phone and had to suspend the throbbing hand in the air even when seated.

In January 2008, a distraught Joseph sought the help of a fourth doctor. After giving him his history, and handing over the results of the various tests he had done, the doctor told him that his problem could be “neural”, a term that meant the pain was related to the nervous system.

Looking back, Joseph says this diagnosis was the closest he came to knowing what was ailing him.

This doctor then referred him to a well-known neurosurgeon. He managed to get an appointment after two months due to the long waiting list.

Meanwhile, he was assigned to a physiotherapist to help him manage the pain. Three weekly sessions at the physiotherapy clinic required Sh7,500, enough to cripple him financially, especially since he had the treatment for three consecutive years.

“Were it not for support from my family, church, and insurance company, I would not have been able to pay my medical bills,” Joseph says.

By 2012, he had had 33 MRIs, a mountain of X-rays and nerve conduction studies, and special tests carried out to measure how well and fast the nerves can send signals from the brain to the body and vice-versa.

Joseph no longer had a social life as his time was spent between work, doctors’ offices, and home. At one point, he was getting as many as 20 injections at a time on his back and fingers, which he was told were to “coach” his nerves to ignore the pain. The doctors had given up on finding the genesis of the pain and were focused on alleviating it. At this point, he was taking strong medication that cost about Sh1,300 a day. The side effects of these drugs included exhaustion and drowsiness, which was akin to torture since he could not sleep even from fatigue.

Perturbed that this patient was not improving, the neurosurgeon consulted medical colleagues from other countries. In late 2013, he called Joseph and told him that he had done everything he could and advised him to seek treatment elsewhere.

Suffering from migraine and with very little sleep, Joseph sought the help of yet another doctor.

“This one told me that all the doctors I had seen taught him for his undergraduate degree in medical school as well as for his Master’s, so there was nothing new he could tell me.”

In April this year, at his wife’s prompting, Joseph went to AIC Kijabe Hospital.

“I arrived at 8am and was directed to a room where a young doctor sat. She looked as if she was in her mid-twenties, fresh from college… my heart sunk. What did she know?”

Since he could not just turn and leave, he sat down. She asked him what his problem was. About three minutes into giving the long history of his mysterious disease, she stopped him and told him that she knew what his problem was.

“I think it is a glomus tumour, but I will refer you to the plastic surgery clinic for a conclusive test,” she informed him.

Coincidentally, it was on a Tuesday, the day the clinic operated. However, Joseph had to wait until 3pm.

The doctor in charge of the clinic, whom he later learnt is Dr Peter Nthumba, a plastic, reconstructive, and hand surgeon, has a rule not to attend to adults until all the children have been served.

When it was finally Joseph’s turn, the doctor asked him a few questions, then gave him a pen and asked him to draw a circle on the painful part of his hand. An exploratory surgery to find out whether there was a growth was conducted on the marked area.

The surgery confirmed what the young doctor Joseph had first seen concluded: He had a glomus tumour. Surgery was scheduled for 28 May this year.

“It was booked for one-and-a-half hours, but it was over within 25 minutes.”

Joseph’s mysterious condition struck a few months after he and his wife, Esther, got married.

The change after the surgery was instantaneous. “I felt sleepy, and for the first time in eight years, I slept until I ran out of sleep,” he quips with a wide smile.

Joseph was in for one more surprise.

“I paid Sh30,000 when I was admitted, three days later,  when I was discharged, a nurse brought me a refund form to fill for Sh9,000… I had to ask whether she was mistaken.

 “You see how comfortable I am seated? I couldn’t do this then,” he tells us.

He jokes that he has gained weight since, partly due to the relief of finally being pain-free and eating the nyama choma he had given up.

 What is glomus tumour?

 We interviewed Dr Peter Nthumba, a hand surgeon, who paints a picture of this rare condition.

He notes: “There are very few hand surgeons in this country. It is also possible that some may never have seen this tumour as it is fairly rare. I have only seen three to four cases in the past six years.

What is glomus tumour?

Glomus tumours are rare benign tumours of the blood vessels.

Glomus bodies are spread around the body but are especially concentrated at the tips of fingers and toes, with highest concentrations being under the nails. They regulate peripheral temperature and blood pressure. Glomus tumours develop from overgrowth of parts of the glomus bodies. Contraction of the glomus cells leads to pain. This contraction may be from various stimuli, including direct pressure and cold. Unprovoked pain is the most disturbing.

What are the symptoms?

The patient may have increased sweating and high temperature of the involved digit, as well as pain.

Who is most affected?

It can affect anyone, though it is more common in women than in men.

How common is it?

It is very rare.

Can these tumours be prevented? 

There is no prevention, but early diagnosis protects patients from the morbidity they experience.