Sometimes, a benign tumour can still pack quite a punch if they are not tackled early on.

IT all began with a small lump. When I consulted an ENT (ear, nose and throat) specialist for an ear infection years ago, he noticed a slight swelling at the side of my neck. After a cancer scare that wasn’t, the whole lumpy episode was duly dismissed as a harmless enlarged lymph node.

Then, seven years later, an observant doctor friend noticed the swelling, which had become quite distinctive. It’s just a lymph node, I said, but he encouraged me to get it checked anyway.

Such scars are a legacy of the numerous operations to remove the paragangliomas

This time round, after a CT scan, a more experienced ENT (and also because the lump, which was now officially classified as a tumour, had grown and was thus easier to identify) diagnosed it as a paraganglioma.

Okay, you got me there. Para-what? It was a mouthful, and sounded more like the scientific name of some bacteria rather than a medical condition.

He explained that paragangliomas were rare, usually benign, tumours that grew into painless, enlarging masses on the upper neck area and other regions of the body.

Upon further research on the Internet, I learnt more about these useless lumps that were invading my body.

It turned out that I did not have just one, but five of these tumours (that were apparent), all growing along the parasympathetic nervous system. Actually, I stand corrected – a sixth one later grew one centimetre away from a spot where a previous tumour had been surgically removed.

Apart from bilateral carotid tumours, I had bilateral glomus jugulare tumours (located near the middle ear region), and one at the tip of my left lung.

To suddenly discover overnight that I had a family of tumours setting up home inside my body was more than disconcerting, to say the least.

Of course, the first thought that came to mind was, were they cancerous?

While it was a relief to learn that these tumours were benign, there was a slight chance that some cells could metastasize and become malignant. And the fact that they grow, albeit very slowly, and press against other organs, meant that they had to be removed before they caused more harm.

According to a medical website, paragangliomas are rare and the incidence is estimated at one per every 300,000 people in the population. Even rarer is that one person should have so many at one time.

Apparently, it can occur at any age, but generally the condition is more commonly found in patients between 45 and 50 years. I was in my 20s when it was discovered.

While I had no symptoms, in time, if left to fester, the masses on my neck would have surrounded the nerves connected to my vocal chords, and cause hoarseness, vocal cord paralysis, or dysphagia.

Although the large majority of carotid paragangliomas are non-secreting, any symptoms of catecholamine secretion of the tumour should be investigated, or so I found out.

Fortunately, in my case, the tumours were non-secreting.

As with many unexplained conditions or diseases, there is no cause-and-effect theory behind why paragangliomas occur, although medical experts speculate that one in four cases may be genetic.

A CT scan helped confirm the diagnosis of paraganglioma, a rare condition with an estimated incidence of one per every 300,000 people in the population.

So then, the question was, where do I go from here?

Everywhere, apparently, as this was where my medical journey became interesting, and I embarked on my long tedious road to recovery.

The ENT referred me to a vascular surgeon, which I didn’t even know was a specialty before this. The first surgeon I consulted explained that while there were various approaches to treating paragangliomas, the best was removal by surgery.

First on the list was the largest tumour on the left side of my neck. Due to its size and position, he explained that the procedure could be complicated. Worse case scenario, he said that he might even have to break my jaw bone and rejoin it later, in order to reach and fully remove the tumour.

Oh, how that freaked me out! I asked doctor friends for advice and scoured the Internet. One of the options that emerged was non-invasive radiosurgery, and this fell under the expertise of a neurologist.

Stereotactic radiosurgery (SRS) is a form of radiation therapy that focuses high-powered X-rays on a small area of the body. Other types of radiation therapy can affect nearby healthy tissue, but SRS better targets the abnormal area. (nlm.nih.gov/medlineplus/ency/article/007274.htm)

I consulted a well-known neurosurgeon in a private hospital in Kuala Lumpur for his advice, hoping that he would take on my case.

He pointed out that while all the doctors I consulted were treating me for the same condition, the tumours were all growing in different parts of my body, and therefore, I would have no choice but to go under the care of different specialists.

I felt confused, frustrated and afraid. At this stage, I needed someone to take charge and tell me what to do. Instead, he threw the ball back in my court; that I had to decide who would “be the captain of my ship”.

Everyone threw possibilities and solutions at me. But ultimately, I realised I had to “steer my own ship” and decide for myself which specialist to handle which tumour, what course of action to take, and when.

Over the next seven years, I saw two vascular surgeons, three neurologists, a cardiac surgeon, two oncologists, a radiologist, four ENTs, an endocrinologist, two anaethesiologists, not to mention a host of general physicians.

I even speculated over the possibility of contacting the well-known Mayo Clinic in the United States for better management of my case, which would easily be possible in today’s cyber climate. But back then, it was too complicated.

And so, in 2003, I plunged into the deep end and underwent my first major surgery. It turned out to be more complicated than anticipated, and took close to 22 hours.

The tumour, the size of an egg, was successfully removed. The vascular surgeon (a different one from the first I consulted) had to do a graft and insert a prosthetic artery to replace part of the carotid artery. The tumour was so tightly entrenched that part of the artery had to be removed.

While it was exhilarating to come out alive, what the medical journals don’t tell you about is the post-surgery trauma that followed. I spoke with a whisper of a voice for almost a year as one of the nerves connected to my voice box was severed during the surgery.

Thankfully, the body is a wondrous organism, and the nerves on the right side compensated for it, enabling me to speak normally again. But till today, I can no longer sing, as my voice wavers and breaks upon reaching certain notes.

But I wasn’t about to audition for American Idol anyway, so I’ve learnt to live within my limitations.

I lost about 10kg and dropped to 45kg, after being on the operating table for so long, coupled with being unable to swallow properly for months after. I developed a frozen left shoulder due to lying in one position for too long. And, the least of my problems I suppose, I had bald patches, as lying on one side for so many hours numbed part of my head and caused my hair to fall out in clumps, some parts never to grow again.

It was a very depressing period of my life, and I thought I would never go down that path again. But that I did, two years later, and this time, I had SRS to treat the glomus in my left ear.

Back then, SRS methods were not as advanced, and I had to wear this metal contraption to hold my head in place to ensure the laser didn’t miss the mark.

Four screws were literally screwed into my head, and this proved to be more agonising than the actual treatment itself, which was painless.

A year after that, I had open surgery to remove the tumour on the right side of my neck, and subsequently, the tumour in my right ear was removed as well.

Today, I’m clinically slightly deaf in the right ear, but it beats living with tinnitus, pounding noises and distorted sounds, which made me feel like I was living underwater all the time for three years.

My last visit to the hospital was for SRS again, this time for the tumour in my chest, and the one that had sprung up on the right side of my neck.

Initially, I had psyched myself for open surgery where the cardiac surgeon would cut all along my shoulder blade on the left to reach the tumour. The thought of having a scar that long, plus months of recovery ahead, had taken a year of preparation on my part as I told myself, “This is the last one. I can do it.”

At the last moment, the surgeon suggested the possibility of SRS. It hadn’t quite been done before, not for a tumour that low down the neck anyway, but it was workable.

After some discussion, I opted not to cut.

It was a lot more bearable this time as I had a specially fitted synthetic frame made instead of the metal Hannibal-like contraption, and it didn’t require any screws. But instead of one session, I had to undergo SRS for a month, and a single stronger dose for the newly formed carotid tumour.

It’s been two years since I last saw any doctor. I should go back for a follow-up to see if the tumours have shrunk or if new ones have sprung up.

It’s taking me a while to visit the hospital corridors again though.

Unlike other diseases, there isn’t a support group for paragangliomas as there’s very little awareness of the condition. Besides, most of the time, it’s not life-threatening, and once the tumour is removed, one’s health is not affected.

I remembered asking my doctor for the name of other patients just to be able to share stories and it was a dead end.

It would have made my last eight years a lot easier to bear had I known I was not alone in my lumpy journey.

I’m sharing my story in the hopes that people will be more aware of this rare condition, before it becomes too large a problem to handle.

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