How a facial swelling has reduced Nyakaisiki’s quality of life

If the disease is not treated, the tumour will continue to grow and eat up the bone until the victim has a double head. PHOTO/ANDREW LWANGA
What you need to know:
- Small fluid-filled sacs, medically known as oral mucoceles, are common lesions that appear in the mouth and then disappear. They are most common in people younger than 30 years. Since they are common, any other similar, less aggressive, swelling in the mouth can be easily ignored, unless it starts growing, as is the case with mandibular ameloblastoma tumours. If left untreated, as in Nyakaisiki’s case, these tumours can grow until one has a ‘double head’ affecting their social life, as Jennifer Kabaale writes
By Jennifer Kabaale
At 22, Zahara Nyakaisiki should be living a carefree life, embracing self-love, without facing difficulties from the world or friends. But instead, she is going through a period of social exclusion, worried about how she is going to foot a Shs9m bill to have her jaw removed, and if more funds can be found, undergo reconstructive surgery.
In the place of Nyakaisiki’s chin is a huge swelling that extends far to her left jaw. When she opens her mouth, because of the swelling, the lower teeth have shifted out of position. The resident of Namungoona, in Kampala City’s Rubaga Division, is scared of going out to look for a job because she is intimidated by the stares she gets whenever she steps out of her parent’s home. One morning in 2015, when she was in Primary Five, Nyakaisiki noticed a small fluid-filled bump on the inside of her mouth. It was no different from other bumps that had come and gone before. She ignored it.
“This bump did not go away. It just continued growing, but at a very slow pace. I informed my mother about it and arrangements were made for me to visit Mulago National Referral Hospital for a diagnosis. At the hospital, a bone biopsy was performed and I was informed that I have kaposi sarcoma,” she says.
Kaposi sarcoma is a rare cancer that causes abnormal lesions to grow in the skin, lymph nodes, mouth, nose, or throat. The sessions are usually painless and can occur singly, in a limited area, or be widespread. However, the doctor who interpreted the biopsy results informed mother and daughter that the medical officers who had carried out the tests had made a mistake. Distraught, they returned home to Masindi District. Meanwhile, the swelling, which was painless, was growing steadily. By the time Nyakaisiki was admitted to Senior One in 2018, she could not stand the curious inquiries from her peers and teachers. She decided to drop out of school.
“My parents looked for money and we returned to Mulago Hospital for a histological examination. This time, the results showed that I had a mandibular ameloblastoma. The doctor who interpreted the results advised us to seek treatment at CoRSU (Rehabilitation Hospital), saying my whole jaw needed to be removed,” Nyakaisiki explains.
The young woman admits that at CoRSU, the consultation and review fees were reasonable. However, several family friends advised the family to seek treatment from herbalists.
“They told us the operation to remove a jaw is not an easy one. I also got scared. I wondered what I would look like without a jaw. Since 2018,I have used many herbal treatments because the herbalists said I only needed to boost my immunity to fight the swelling. None of the herbs have helped. Now, the swelling is unbearable,” she laments.
The herbal treatments have cost a fortune and now, the family has decided that the only treatment option available to remove the swelling is surgery. Although she is still living with her parents, recently, Nyakaisiki began plaiting people’s hair to earn a few shillings to contribute to the hospital bill.
“I had to stop though, because my bones and joints ache. I cannot stand for a long time. The Shs9m covers only the operation at CoRSU. The medication and reconstructive surgery form a separate bill. Mandibular ameloblastoma Dr Annah Margaret Biira, a maxillofacial and oral surgeon, and the head of Makerere University’s Dental Hospital and School, says mandibular ameloblastoma is a non-cancerous tumour that grows in the lower jaw.
“It is a jawbone tumour that originates in the tooth forming structure. That is why it is common in the mouth. Some ameloblastomas are slow in growth while others are fast, but in most cases, due to its painless nature, by the time a diagnosis is made, it is at least three or four years old,” she says.
Mandibular ameloblastomas are not infectious and symptoms are usually a lump or swelling in the jaw that may perforate the bone or tissue. Dr Biira says if left untreated, the tumour can grow large, distorting the shape of the lower face and jaw as has happened in Nyakaisiki’s case.
“The tumour is caused by many things, some of them environmental while others are genetic. However, not all people who are exposed to the same environment develop it. What we are noticing is that men are more susceptible to contracting it than females, although we do not have a full conclusion on why,” Dr Biira adds. Who is at risk? Dr Bridget Nakazibwe, a dental surgeon with Premium Dental Clinic, says since the swelling originates in the teeth-forming epithelium, any person who is still developing teeth is at risk of getting mandibular ameloblastomas.
“People at risk are those who have had previous fractures, repetitive viral and bacterial infections, protein and vitamin D deficient diets, and those who have had minor dental cysts. The first time you see a swelling, run to a dentist, who will perform a routine dental X-ray to reveal the cause,” she cautions.
A biannual dental checkup is recommended if dental problems are to be minimised. For Nyakaisiki, however, this routine exercise was ignored right from 2015 when her troubles began.
“Sometimes, the swelling hurts, especially when I eat hard foods or when I knock myself on a door or bed post. I feel palpitations inside the swelling. Sometimes, it secretes a clear fluid which passes through my teeth and flows outside the mouth,” she says.
The young woman sleeps on her right side because the jaw is not as swollen as her left jaw. She says she no longer fits in the public sphere because when people look at her, they whisper. That affects her peace of mind, although the kind ones approach her with advice on different medications to use.
“I try to close my mouth whenever I am in public, but I can only do that for a short time. If I close it for a long time, my jaw hurts because the swelling pulls the flesh around the mouth. I cannot walk into an office or shop to look for a job because I am scared of what people will say,” she laments.
Treatment options Surgery and bone resection are the most effective treatment options available. Dr Biira says in the early stages, when the tumour is less aggressive, surgery is carried out to remove only a small part of the affected jaw. However, if the tumour has progressed in size, the whole jaw must be taken out.
“When the whole jaw is removed, the disease is cured. It is only in rare cases that mandibular ameloblastoma recurs. However, the cost of treatment is very high. One needs a bare minimum of Shs65m to fully treat a grown ameloblastoma. Apart from removing the jaw, one needs to fill up the place where it was. That involves cutting a bone from another part of the body, reshaping it, and fixing it into the mouth,” she says.
Because the teeth are removed with the affected jaw, a new set of artificial teeth have to be procured. So, while the cost of removing the tumour is manageable, the reconstruction surgery is very expensive.
“That is why I appeal to anyone who has a swelling they do not understand, in their mouth, to present it to a dental surgeon. Sometimes, all that is needed is a single miniplate to be fixed into the mouth in order not to alter the facial structure,” Dr Biira advises.
The surgery to remove a mandibular ameloblastoma and reconstruct the jaw is carried out by a team of surgeons. It usually lasts about six hours and is done in one go. It is advisable not to wait too long between the two procedures because the little bone that is left on the jaw can be lost.
“If the disease is not treated, the tumour will continue to grow and eat up the bone until the victim has a ‘double head.’ The massive swelling can cause a lot of stigma to the victim in the community,” Dr Biira says.
Dr Nakazibwe adds that although malignant mandibular ameloblastomas are rare, the complications from the swelling may be fatal to the victim.
“The tumour can compromise the airway causing the victim not to breathe well. The swelling can also cause one not to swallow food. The tumour can also encroach on the soft tissues of the neck. It can also get infected, causing one to lose their teeth because it grows on the inside and outside,” she says.
If left untreated, with time, the tumour might become malignant. The surgeons advise frequent dental checkups, especially if one experiences symptoms such as teeth getting mobile and expanding jaw with no pain. Nyakaisiki appeals to the general public to help her contribute towards the surgery to remove the tumour since it is growing every day.
Causes
According to mayoclinic.org, ameloblastoma begins in the cells that form the protective enamel lining on your teeth. Rarely, it may start in gum tissue. The exact cause of the tumour is unclear, but several genetic changes (mutations) may be involved in the development of ameloblastoma. These changes may impact the location of the tumour, the type of cells involved and how fast the tumour grows. Ameloblastomas are generally classified by type, but they can also be classified by cell type. The four main types include:
- Conventional ameloblastoma. This is the most common type and grows aggressively, usually in the lower jawbone, and approximately 10 percent recur after treatment. lUnicystic ameloblastoma.
- This type is less aggressive, but typically occurs at a younger age. The tumour is often in the back of the lower jawbone at the molars. Recurrence is possible after treatment.
- Peripheral ameloblastoma. This type is rare and affects the gums and oral tissue in the upper or lower jaw. The tumor has a low risk of recurrence after treatment.
- Metastasizing ameloblastoma. This type is very rare and is defined by tumor cells that occur away from the primary site in the jaw