Australian woman with rare facial nerve pain seeks cutting‑edge treatment after surgery cancellation

A 29‑year‑old woman from Adelaide who developed severe, persistent facial pain after two bouts of COVID‑19 is seeking advanced neurostimulation therapies after surgeons cancelled an MRI‑guided procedure because of safety concerns.

Emily Morton began experiencing a sharp, "zapping" sensation in a front tooth in February 2022. After dental X‑rays showed no pathology and the pain spread across her upper teeth, she underwent multiple specialist consultations and was told she likely has atypical trigeminal neuralgia, a chronic nerve pain disorder that can be debilitating and is sometimes described in media coverage as the "suicide disease" because of its severity and the suicide risk among sufferers.

Morton told the Daily Mail that the pain began after a mild COVID‑19 infection and intensified after a subsequent COVID‑19 episode months later, which she described as a "lightning storm" of electric shocks across her face. Over the following two years, she said the condition spread to most of her teeth and was accompanied by postural orthostatic tachycardia syndrome, severe tinnitus and cognitive symptoms commonly described as brain fog. She has been unable to work full time since 2023.

Doctors in several cities examined Morton and advised against surgical intervention because her pain affects both sides of the face, a presentation that is rarer than the more typical unilateral trigeminal neuralgia. Physicians told her that operating carried a risk of making symptoms worse. Early this year, Morton was scheduled to undergo an MRI‑guided focused ultrasound procedure in Victoria, a noninvasive technique used for some disabling neurological conditions in which ultrasound waves are focused to disrupt targeted tissue. Weeks before the appointment, surgeons cancelled the treatment after determining her skull density ratio made her a poor candidate and that achieving therapeutic energy levels would pose health risks.

Morton said the decision, while disappointing, was ultimately a relief because of the safety concerns raised by clinicians. She later identified clinics in Sydney that offer highly specialised neurostimulation and personalized brain mapping approaches. One centre conducted advanced MRI connectomics to map her individual pain pathways; another uses individualized targeting for transcranial magnetic stimulation. Morton said these options renewed hope but would be substantially more expensive than the previously scheduled procedure.

"It is like acid being poured on your gums while simultaneously having ice cream on your teeth all day — all while they're being smashed with a hammer," Morton told the Daily Mail, describing continuous burning, buzzing, stabbing and electric‑shock sensations that can be triggered by chewing or speaking. She said the condition has taken a toll on daily life, making eating, socialising and exercise difficult, and has forced her and her husband to move in with her mother as he provides care.

Trigeminal neuralgia is a neuropathic disorder that affects the trigeminal nerve, which carries sensation from the face to the brain. Typical symptoms include sudden, severe facial pain often triggered by light touch, toothbrushing, eating or talking. Most cases are unilateral; bilateral presentations and atypical forms can be more complex to treat. Medical management may include anticonvulsants and other medications, and some patients may be candidates for surgical procedures such as microvascular decompression or ablative techniques, though candidacy depends on individual anatomy and risk factors.

Morton said she has travelled interstate and overseas seeking diagnosis and relief, and has tried a range of holistic approaches without sustained benefit. She has enrolled in a return‑to‑work program and has begun advocating for broader access to cutting‑edge treatments for Australians with chronic neurological conditions. She told the Daily Mail she has contacted health ministers to discuss how her experiences might inform policy and access to specialised therapies.

Clinicians who evaluate candidates for MRI‑guided focused ultrasound consider multiple factors, including skull density and geometry, because effective treatment requires passage of sufficient acoustic energy to a targeted structure without causing collateral damage. When skull characteristics make the required energy levels unsafe, alternative therapies such as neurostimulation, targeted radiation or conventional surgical options are reviewed, though each carries its own risks and potential benefits.

Morton and her husband have created a fundraising campaign to help cover the cost of further assessments and treatments. She said the search for an effective, affordable therapy is urgent for many people with post‑viral or otherwise treatment‑resistant chronic pain syndromes.

Health professionals encourage anyone experiencing severe or persistent facial pain, or who is having thoughts of self‑harm, to seek medical attention immediately. In Australia, Beyond Blue can be reached at 1300 224 636 and Lifeline at 13 11 14.

Morton's case underscores the complexities clinicians and patients face when a rare or atypical presentation limits established treatment options and when emerging therapies require specialised assessment. She said she remains determined to find a path that reduces her pain and to advocate for improved access to advanced diagnostics and treatments for others in similar situations.