AMHERST – Imagine having to live with excruciating mouth pain all day, every day. That’s the harsh reality for Janice Landry who has suffered for the past four-and-a-half years with what is thought to be a rare and chronic medical condition known as Burning Mouth Syndrome.
“It’s like the inside of my mouth is being stung constantly by bees,’’ she emotionally explains. “The pain most days is unbearable. I’m just so sick and tired of it.’’
The condition, which started out as a painful burning or scolding sensation of the tongue, teeth, lips, gums, throat, and roof of the mouth; first reared its ugly head following a complicated tooth extraction which is not uncommon when it comes to BMS.
“It’s well documented that this can be the primary cause of BMS due to nerve damage,’’ says the 53-year-old Amherst woman who, despite spending thousands of dollars in out-of-pocket expenses and doing everything imaginable to find a solution, hasn’t had a single day of relief since the nightmare began. “This appears to be the case with me since all other options have been exhausted.’’
But her mouth pain has continued to change and worsen over time and in recent months; has escalated to include extreme feelings of pressure and throbbing in those same areas. Her tongue is bruised and scalloped along the edges and there’s numbness and tingling in her lips all the time but especially after eating and talking.
“The bitter, metallic taste in my mouth makes me nauseous all the time.’’
Life has changed dramatically for the once vibrant and independent mother of three who has been left unable to work, mentally and physically exhausted and unable to function during what were supposed to be the best years of her life.
“I feel robbed of what could and should be a fun and full-filling life,’’ she says while fighting back the tears. “My children had just left the nest and my husband and I were so excited to start the next phase of our lives.’’
Landry now spends most days alone at home; isolated from family, friends and her community which has left her feeling extremely depressed, anxious, uninterested in life and hopeless about the future.
“The biggest thing for me is the feeling of loneliness and isolation. Spending day-after-day pretty much by myself just deepens the sense of depression.’’
She has spent the past four years on a lonely journey of searching out possible treatments and medications but, so far, nothing has worked. To make matters worse, few seem familiar with BMS.
“The biggest problem is very few healthcare professionals have ever heard of it let alone have an approach for treatment. The deer in the headlights response has been incredibly frustrating for me.’’
She has gone far beyond mainstream medicine; trying a plethora of costly alternative and holistic medical techniques and seeking treatment in three different provinces including Nova Scotia, New Brunswick and even Toronto, Ont. where she was unsuccessfully treated by a renowned Canadian oral pathologist.
She also reached out to the Mayo Clinic in Cleveland, U.S.A. but was turned away after they discovered she had already tried the recommended oral medications typically used to treat the condition.
She has met with and been treated by a long list of health care specialists over the years including a naturopath, chronic pain specialist, dentist, maxi-facial surgeon, oral medicine specialist, energy therapist, allergist, anti-aging physician, rheumatologist, neurologist, surgeon, hormone specialist, acupuncturist, Chinese medicine specialist, massage therapist, and psycho-therapist. She was even issued a medical marijuana card but, like all other forms of treatment to date, the cannabis oil failed to give her any relief.
She has also tried vitamin supplements, anti-depressants, neuropathic pain medications, and specially developed compounds; and undergone blood tests, oral cultures and biopsies, allergy tests, salivary measurements and imaging as well as temporarily stopping medication and psychological assessments
“I’ve spent $6,000 in out of pocket expenses over the past year alone,’’ adds a disheartened Landry. “It’s expensive and exhausting.’’
Having explored all known forms of treatment; she’s now been told nothing more can be done for her. She is out of options and desperately reaching out to the media in hopes of finding someone, somewhere who can help.
“I feel so hopeless that this is the way my life is going to be forever; with no light at the end of this very long and dark tunnel.’’
- Submitted by Jennifer Gouchie-Terris
