35 surgeries later: Ssennuuni’s triumphant story over bone disease

Two weeks after his birth in 1995, Amos Ssennuuni got a small wound on his left leg that ended up swelling. When he was taken to Kalangala Health Centre IV in Kalangala District, he was diagnosed with osteomyelitis. This disease occurs when bacteria from nearby infected tissue or an open wound circulate in your blood and settle in bone, where they multiply. 

In Ssennuuni's case, the disease multiplied quickly, causing an infection of the bone. When he was six months old, Dr Herman Musiitwa of Masaka Regional Referral Hospital performed surgery to remove dead portions of bone tissue.
Three weeks later, he underwent another surgery since the infection continued affecting the tibia, femur and the knee joint of his left leg. 

A year later, he underwent another surgery. Between 1995 and 2006, he had undergone 13 surgeries. Fortunately, the infection of the bone completely cleared but his femur stopped growing. His leg also became stiff and shorter.

“At the hospital, doctors put a cast on it but it was not helpfu since my left leg was already eight centimetres shorter than the right leg. Iwould fall all the time due to lack of balance,” he says.

Ssennuuni was then given a shoe-raise with a caliper to reduce the risk of falling while walking. While in Primary Seven, his caliper accidentally got stuck in barbed wire and he fell. 

“I broke my left arm and needed a cast. A few weeks after sitting my Primary Leaving Examinations, I fell again and re-injured the arm. I was always in the hospital, it became my second home,” Ssennuuni sadly says.

Determination 
When he joined secondary school in 2010, he was rejected and teased by fellow students because of his condition. He walked with a limp and would always fall. By the time he was taken to Katalemwa Cheshire Home in Gayaza, his left leg was 20cm shorter. 

In order to help him balance while walking, Dr Emma Odhiambo, a general physician, recommended bone lengthening surgeries but Ssennuuni declined them owing to the pain he had seen other children go through. However, when he had another terrible fall in 2013, he willingly went to the rehabilitation home and accepted to go ahead with the surgery. 

On January 3, 2013, he was taken toComprehensive Rehabilitation Services in Uganda (CoRSU) Hospital in Kisubi for counselling as they prepared him for an osteotomy (any surgery that cuts and reshapes your bones). On January 16, he was taken into theatre and this time, his leg was 27 centimetres shorter and he had lost the patellar (kneecap) to osteomyelitis. 

Bone lengthening
Two weeks after the surgery, before being discharged, he was taken for physiotherapy to teach him how to exercise and adjust the length of the bone daily in order to attain the required length.

“I was taught how to increase the generated space between the bones that would later join to attain the same length as the other leg. The adjustments were very slow and came with a lot of pain. In cold weather, the metals radiated the coldness into the bones and the pain was unbearable,” he says, adding that it would take him 10 days to adjust the regenerate to one centimetre.

The process was coupled with reviews, assessments, x-ray exams and whenever the assessment revealed there was an over-stretch, he would be asked to pause the daily adjustments.

“The biggest challenge he faced was the pins becoming loose. This meant being taken to theatre again and under general anaesthesia, the loose pin would be removed and replaced. And because I still wanted to live a normal life, I would go to school whenever I felt better,” he says.

He adds, “To date, I suffer inflammation from chipped bone pieces. It starts with swelling and reddening of the area, pus develops and after some time, I see a piece of bone popping out. However, I have learnt to handle these complications without necessarily going to hospital.” 

When the bone grew to about 13cm length, doctors advised Ssennuuni to wait until the bones reconnected to cover the space that had been left, which took about two years. The metals were removed in 2015 and he was given a grace period of six months to enhance complete healing.

The second phase of lengthening had to start as soon as possible so the fixators were replaced and he had to embark on adjusting the length of the bone, which took another 593 days.

One more surgery
By 2018, the bone attained the required height and while he was excited that he would be able to walk without the shoe-raise, he realised that he was only able to walk on his toes. This is because his Achilles tendon had become so stiff that his heel could not touch the ground. 

“I went into theatre for the 35th time for surgery to stretch a tight Achilles tendon and increase motion at the ankle joint. I had the cast changed severally until in 2020 when I finally stopped going to hospital,” he says.
Ssennuuni says although he cannot walk for long distances, he is happy to be able to walk normally and wear shoes. 
About osteomyelitis

Dr John Ekure, an orthopedic surgeon at Kumi Orthopedic Centre, says osteomyelitis is one of the neglected tropical diseases that causes disability among many children. It is usually worsened by malnutrition, negligence, ignorance and poverty, he says.

An inflammation of the bone and bone marrow caused by bacteria, osteomyelitis is common in children suffering malnutrition and adults with compromised immunity, especially those who abuse drugs including alcohol and narcotics and those suffering from HIV, cancer or diabetes mellitus, among others. 

“When one has a common cold, brushes their teeth or when a child has a cough, small blood vessels in the lining of the throat or nose for example break and hence, the resident bacteria on these linings gets access to the bloodstream,” Dr Ekure says. 

This leads to active multiplication of these organisms in the blood stream, leading to a bacteremia infection. In the event that one does not have adequate defenses against these bacteria, as a result of HIV infection, malnutrition and other predisposing factors, the infection gets established, usually in long bones.  

Pressure then builds in the bone from the pus formed and it strips the bone of its blood supply, leading to death of bone tissue. The outer lining of the bone may be separated from the rest of the bone that is dead and this later lays down new bone called involucrum. The dead bone migrates out through the skin with associated pus discharge. 

“Osteomyelitis is a preventable and curable disease. Parents or patients need to pay attention to any discomfort or pain that a child or adult may complain of. There is always an associated history of trauma, which may be true or imagined,” Dr Ekure says.

Cost of delayed treatment
Dr John Ekure, an orthopaedic surgeon at Kumi Orthopaedic Centre, says some cases of osteomyelitis follow open fractures. When a patient with an open fracture presents to a health facility, the patient should be treated as an emergency and if the technical expertise is lacking, the patient should be urgently referred to another facility. 

“Any delay leads to complicated and costly treatment. Our beliefs in African traditional treatment need to be addressed. Traditional medicine cannot cure osteomyelitis or open fractures and this needs to be put clearly to practitioners of alternative medicine,” he advises.

The best way to prevent osteomyelitis is to keep wounds clean. If you or your child has a cut, especially a deep cut, wash it completely under running water then bandage it with sterile bandages.

Signs
In the acute phase, a patient will present with fever, swelling and pain. Once presented early, the infection can be aborted with antibiotic treatment, especially within the first 48 hours of disease onset. 

“It is, however, costly to treat when it has become chronic. It will require surgery and sometimes more than one operation is required. A patient may end up with complications such as severe bone deformities, leg length discrepancies and large bone defects among others,” Dr John Ekure, an orthopaedic surgeon at Kumi Orthopaedic Centre adds.