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SUMMERSIDE, P.E.I. – Trudy-Lynn McKibbon is in pain, all day, every day.
“I can’t even give my kids kisses half the time, because just to move my mouth, it hurts. It’s taken away a lot of my life.”
She has a condition called temporomandibular disorder (TMD). It affects the joints in the jaw that work as the hinge. It’s causing the muscles in her jaw to tense uncontrollably and has her dealing with pain all the time from the swelling.
Signs or symptoms of TMDs:
- pain and tenderness in or around the ear, jaw joint or muscles, face or temples.
- problems opening or closing your mouth
- clicking, popping, crunching or grinding noise when you chew, yawn or open your mouth.
- neck pain and headaches.
Source: Canadian Dental Association website
It is so bad sometimes her ears bleed.
It all started in 2008, and after a stressful time in 2011, the pain set in in earnest.
Eventually, she had to leave her job.
“I’m a certified chef. I’m put off work and I’m starving to death,” she said. “Ironic, a chef that’s starving to death.”
Chewing anything is unbearable.
“I drink yogurt drinks and milk. I go through a lot of milk. It’s pretty much what keeps me alive.”
She’s been down under 100 pounds a few times since she got sick, and hides her body from herself and her kids under layers of clothes.
The mother of four said her kids don’t always get the supper she wants to serve.
“I’ll microwave it and I’m a chef. My kids should be eating very well,” she said. “I’ll make supper and I’ll go flop on the bed.”
McKibbon knows her illness is a burden on her children.
“Mom’s jaw is hurting a lot and she’s not able to do much stuff,” said Aleesha, 12, who helps take care of her youngest sister, Harley, 17 months.
“It’s just kind of upsetting she has to do everything with her jaw hurting all the time," said Aleesha. "She can’t sleep that much because her jaw hurts, and Harley wakes up pretty early.”
McKibbon has tried “pretty much everything” doctors and dentists have recommended.
First, she had all her wisdom teeth removed, just in case they were the problem.
She went to physiotherapy. She used a bite plane, a special mouth guard to stop her jaw from meeting, but she said it did more harm than good. Her teeth cracked and some of her fillings cracked and fell out. She hasn’t been able to get the cavities refilled because of the illness.
McKibbon has gotten a lifetime’s worth of cortisone injections, too.
At only 32 years old, she wants to be well for her kids.
But it’s hard when chewing is impossible much of the time.
In June, McKibbon visited Dr. Stacie Saunders, a TMD specialist in Nova Scotia.
Saunders sent her home to P.E.I. with a letter and a new hope – Botox.
The idea is for the Botox to relax the muscles. It may take several treatments, but once the muscles return to normal, McKibbon can get surgery to fix the worn-out bone in the joints in her jaw for good.
“Sadly, Trudy’s chronic facial pain and migraines are beyond her control and she is in a crisis situation. For her health, well-being and possibly survival, I would strongly recommend a trial Botox injection therapy for pain management,” wrote Saunders in her letter.
A local doctor said he would administer the treatment since it looked like the province would cover the procedure.
“I had my hopes up so high,” she said.
Then at the last minute – the day of the appointment – the doctor’s office told her the province denied the request.
The province does cover Botox injections for bladder conditions, she said, but to receive them in her jaw it would cost the single mother of four $1,500 a treatment.
Unable to work, she’s on social assistance and can’t make the lump sum payment required. She asked, but the office couldn’t offer a payment plan.
“It shows right in there that my survival is based on this treatment, and here I am. Starving,” she said.
“I’m a certified chef. I’m put off work and I’m starving to death. Ironic, a chef that’s starving to death.”
“There are a number of surgical procedures that require prior approval and may be covered by Health P.E.I.,” read a statement send on behalf of Dr. Andre Celliers, Health P.E.I.'s executive director of medical affairs.
“The physician or nurse practitioner must request prior approval in writing to Health P.E.I.’s medical affairs division. The request must outline the patient’s condition, the treating procedure being requested for approval, and the medical necessity for said procedure.
“Each case is reviewed individually by medical affairs and assessed against any defined criteria in the master agreement and/or dental agreement. Health P.E.I. may also seek the opinion of its medical consultant. The decision to approve or deny the request to cover the procedure is then communicated to the physician or nurse practitioner.”
Despite McKibbon’s efforts, it’s not clear if a doctor has sent in a request on her behalf, but it’s clear from the specialist’s letter that she believes McKibbon’s symptoms merit Botox treatment.
The Journal Pioneer was not granted an interview with anyone in the department of health in order to discuss an appeal process or the policy on Botox treatments.
McKibbon tries every day to keep going, for her kids and for herself, but she said hopelessness is creeping in.
“It’s just not even the physical pain of it, the mental,” she paused for a long moment.
Her voice shook as she continued.
“Sometimes I feel like it would be better if I didn’t wake up in the morning.”
McKibbon’s health issues don’t stop with the pain, lost fillings, bleeding ears and extreme weight loss.
Two weeks ago, she got word that the cervical cancer she thought was removed in February had returned.
Due to her emaciated condition, her immune system is worn out, she said.
“I’d rather not go through the treatment and all that crap if I’m still going to have to deal with this jaw.”