Dentists would not treat my toothache – now my health has been wrecked for ever

I was fit and healthy when I first felt pain in a molar. After numerous dentists and doctors left it untreated, there were knock-on effects throughout my body. Today I am in constant pain and look almost unrecognisable Keren Levy Wed 20 Apr 2022 10.00 BST In 2019 I was fitter than at any other point in my life – and I had a life I loved. It was my third year at the BBC. Every day at New Broadcasting House, I knew that I was seeing world events from a rare vantage point. I loved being surrounded by all the TV monitors and feeling at the centre of things. It had its trials, like any job, but it never stopped feeling like a privilege. Alongside my work, I was an open-water swimmer and had just topped 20 years of swims between islands and across lakes and rivers with an outing in the Galápagos. In the past I’d climbed Kilimanjaro, raced across the Hellespont in Turkey and along the Thames. I swam between the Cyclades in Greece every autumn and loved the Aegean with a passion. I relished returning to London. I was the first at plays and the cinema. I loved clothes; I probably bought too many. At weekends I would run along the river, then have long breakfasts with friends. And, in a way that is now not unusual, I was in better shape at 52 than I had been at 32. When a routine blood test detected my mother’s cancer that spring, it was devastating. The amount of time she had left was uncertain; but I spent it all with her. For months I ate sugary treats left by visitors in that inattentive way we can have when our focus is elsewhere. Uncharacteristically, I neglected my teeth and toothbrushing. So it didn’t surprise me when, by November, I had intermittent toothache in a left molar. An emergency dentist X-rayed it and told me this showed nothing untoward. I was surprised but reassured.

In the manner of turning points, I remember that appointment vividly. But three weeks later the pain was constant. Once again the dentist said there was no visible issue, so it couldn’t be dental. I began to suspect, however, that one does not necessarily imply the other. I made it through Christmas, but by the end of January the tooth was agonising, and the gums in my upper jaw had paled, with visibly reduced blood supply. An adjacent tooth began to hurt. These physical changes, after the increased pain, became alarming. The day after my mother died I went to a different dentist. This was the last thing I wanted to be doing. But it was three months since the intermittent tooth pain and I was worried by the further effects I could feel and see. Another “non-definitive” X-ray ensued. Now desperate, I said I didn’t care about the X-ray. I had developed a horribly specific rotting taste. I knew the tooth was necrotic – in other words, dying. I could feel it leaching into the surrounding area and beyond. I begged her to give me a root canal treatment or extract it. These are the only options for necrosis. Without a visible sign this was needed, she refused. Instead, she referred me to my GP, implying my distress was bereavement, an argument it is impossible to beat. By early February, pain in a neighbouring tooth was accompanied by acrid liquid. My gums remained blanched. The top of my left cheek reddened and the skin at the edge of my left eye dried and developed a crust. If a body could scream infection, mine was doing so. The dentist was implacable. The fact several teeth hurt meant she couldn’t “narrow it down” to one. I said it had been just the molar for months, making it more urgent, not less. I begged her to treat it, reiterating the effects on my gums. “Gums can be pale,” she told me. I said mine had not been, before months of dental pain. I was clear that if the tooth went untreated I would end up with multiple necrotic teeth, and my health destroyed. She offered me a night-guard, refusing me treatment. It felt like having gangrene and being offered a bandage. I was four months into my ordeal and facing a pandemic. In the March 2020 lockdown, dentists stipulated emergencies only. Existing X-rays were requested, which I already knew did not show the issue sufficiently. I was referred, against my wishes, to an oral surgeon and facial pain specialist. Neither is relevant for tooth infection. I attended because it seemed the only route to get back to a dentist. The acrid taste grew. Peering over half-moons, the surgeon conveyed the sense of unlimited time to rule things out. He told me I had “atypical facial pain”, perceived as dental. I was clear this would not bring a rancid taste, visible loss of blood supply or discolouration. The second non-dental specialist diagnosed “burning mouth syndrome”, although I had only one of eight symptoms. Over the next four weeks, starting from the false assumption that I was not suffering from a dying tooth – now teeth – every opportunity was taken to refer me to non-dental specialists. I was misdiagnosed as many times. If it hadn’t been so damaging, the refusal to look inside the tooth would have been comic. Did I know what “referred pain” was, the specialists asked? I did. But this wasn’t a case of perceiving more teeth to be affected and being unable to identify which hurt. More teeth were now affected. The surgeon prescribed pain suppressants and duloxetine antidepressants, for three months. He informed my GP surgery, and a doctor who had never met me insisted I take them. It is a particular horror to have no choice over your health when the solution is available. In despair, I took the pills knowing neither treats infection. When I said so to a virtual GP, he told me to double the dose. Keren with her mother in September 2019. Levy with her mother in September 2019. Photograph: Courtesy of Keren Levy The leaching sensation increased. Sugarless gum became the only way to reduce the rotting taste from my teeth. Several became dark yellow. Finally, the first dentist agreed to carry out a root canal on the original tooth, only to withdraw this, having attended a dental conference, because “perhaps you need a massage for facial pain”. The tooth remained intact. By April, referred by 111 to a new dentist, I knew not to mention my mother’s death, to avoid further onward referral on the basis this was pain related to grief.

Having to start again meant this new dentist did not have direct experience of the progress and impact of the infection. Now, in stark contrast to the previous November, I looked as if I had never been particularly healthy. A 3D scan showed the original tooth to be necrotic, as I had said five months before. Evidence of the infection was clear in the surrounding bone. By the time it is seen in the bone, dental infection is advanced. Molars are our largest teeth and mine had four canals, which had increased its pain and impact. My dentist records that the delay in treating the original dental infection appears to have triggered a systemic response in my body’s autonomic or endocrine system. Having had perfect health, eventually I had to have 12 root canals; all those teeth were necrotic. Few showed up as dramatic issues on X-ray. Before these surgeries, my teeth, bones and skin were affected. My vitamin D levels plummeted. Even my toenails became liable to infection. By June 2020 an MRI showed me to have developed scoliosis, bursitis in my left shoulder and tendinitis in my left hip. Once known for walking at speed, I now inch forward. My skin became sensitive to sunlight. Problems with my circulation, particularly when I face downwards, meant I had to give up swimming. I developed numerous inflammations. Known for walking at speed, I now inch forward Confronted by the facts, the first dentist said that, had he been in his Athens surgery, he would have carried out a root canal on the original tooth. But here, in the UK, he had been concerned he could be held to account by General Dental Council (GDC) regulations, given the X-ray image had not been “definitive”. He had not said this at the time. A doctor and trainee dentist that I spoke to confirmed the chilling reality of “defensive dentistry”, whereby fear of litigation sees dentists offering patients minimal or no treatment when they cannot “justify” the need, largely via X-ray, and particularly seek to avoid doing any endodontic (root canal) treatments in major teeth. I have learned that there is widespread recognition that X-rays do not always capture dental issues. In my case this was disastrous, but should not have been left to become so. The idea that a patient’s worsening dental pain in one tooth, then several, followed by a rotting taste, does not justify physically looking inside the original tooth is dangerously wrong. All characterise dental infection. An editorial in the British Dental Journal (BDJ) as long ago as 2014 described a climate of “fear and distrust” that had led to defensive dentistry because of the prospect of legal action or disciplinary procedures if anything goes wrong. The journal makes it clear this is widespread in the UK. It clarifies that defensive dentistry “does more than prudently assess risk … It shrinks from suggesting, let alone attempting, any action or treatment whether or not it is in the patient’s interest ‘just in case’.” More recently, in 2019, David Westgarth, the editor of the magazine BDJ in Practice, found that “the effects of defensive dentistry are plain to see; clinicians will routinely deny treatments which they could reasonably offer but wouldn’t due to the risk of a possible escalating complaint, even despite mentioning all the risks and gaining ‘valid’ consent”. Fear of litigation sees dentists offering patients minimal (or no) treatment when they cannot ‘justify’ the need My own experience extended to hospitals when I tried to seek treatment, in the wake of the dentists’ refusal to provide it. I was referred to the oral medicine department, which offers “non-surgical management of non-dental pathologies”. Withholding of dental investigation and treatment was accounted for, and recorded, by dentists on the basis of my recent bereavement, or facial pain, or neurological possibilities (which did not fit the account I provided). I was then corrected on the order and nature of my symptoms, to fit with these diagnoses. In a letter to the BDJ, a dentist with experience of working in hospitals argued in November 2020 that “the GDC and the medical-negligence lawyers have created a climate of fear and defensive dentistry of unprecedented proportions. I feel that this pattern will continue to evolve to a point where any and all slight variations from the absolutely normal will be referred on to secondary care. The only way to circumvent this inevitability is a fundamental change in the system.” Dentists find it difficult to adhere to their first commandment, which is ‘to put patients’ interests first’ BDJ report from 2018 Another BDJ report from 2018, incorporating the views of dentists, found the GDC “has rather perversely created the current threatening environment where many younger dentists find it difficult to adhere to their first commandment, which is ‘to put patients’ interests first’.” My case was a horrific example of excessive diagnostic testing delay, instead of treatment. Months of referrals to neurologists, maxillo-facial specialists, psychologists, GPs, oral medicine departments and other dentists went against common sense and ensured responsibility could never be laid at a particular dentist’s door. Invariably, the first question was: “What did the last dentist say?” = Each delay cost me. Arguably, being a woman presented further challenges in securing the correct diagnosis. It would have been entirely different if the dentists’ resistance to doing treatment had been made transparent. In January 2020, my offer to sign a document saying I had asked for treatment after prolonged dental pain, and accepted any outcome if the tooth proved healthy, was refused. To lose one necrotic tooth was nothing compared with the consequences of leaving this dental infection untreated. The afternoon the original dentist told me he would not, after all, treat the tooth I was so upset I rang Samaritans. I knew my health was lost. Two years after the original misdiagnosis, I have no quality of life and am in constant pain. Although the root canal treatments mean my teeth no longer hurt, they were too late to reverse the knock-on effects on my body. I won’t work again, and I look almost unrecognisable. It hurts when I see the faces of former colleagues. Sometimes the careful politeness of friends is worse still. I am alienated from the raucous directness I cherished. It is telling that online searches about dental infections, including their urgency and possible impact, take you to numerous American and continental dental practices and their websites. There is no wilful conflation, as there was in my experience in Britain, of “do nothing” with “do no harm”. Many of us will know of someone whose health was affected by overzealous dentistry. Equal focus needs to be given to the failure to treat where treatment is essential. My nightmares are not of what happened but the dream in which the first dentist, by the third appointment, does the only logical thing and looks inside the tooth. I am saved all further misdirection. What happened to me would have been avoidable if someone had simply listened to what I described, when I described it, and carried out timely action. It wouldn’t have mattered even if I had a bad physical response to the initial tooth infection. I conveyed everything at the time, repeatedly, but was, repeatedly, ignored. It should have been unthinkable.