Meet Hannah. She is 23 years old. She is a paramedic, spouse, stepmom, sister, and the best daughter a parent could ask for. Watching her grow from a goofy and very loud child who loved to play ringette into this gorgeous, kind, and sometimes sassy young woman has been one of my greatest joys in life.
At age 17, Hannah went to get her wisdom teeth removed and shortly after, her world changed. She began feeling a deep, dull, pressure-like pain in her jaw that has worsened over the past 5 years. Doctors have given us less and less hope that she will ever be able to live a “normal” life without an abundance of medications, including opiates.
This is unacceptable.
Dentists loosely diagnosed her with TMJ shortly after the pain started. Since then, she has seen multiple doctors and specialists, some of whom have agreed with a TMJ diagnosis and some that have disagreed. She has seen a rheumatologist, physical therapist, chiropractor, massage therapist, dentist, orthodontist, chronic pain specialist, the oral surgeon who extracted her wisdom teeth, psychiatrist, ENT, family medicine doctors, and essentially have tried every path possible aside from a neurologist (she could not get a referral) and a TMJ specialist. With seeing all these doctors came a multitude of tests, including MRIs and x-rays of the jaw that were taken over 3-4 years ago. She was referred to The Centre for Cranial Nerve Disorders in Winnipeg and got rejected without being seen as they are “not able to treat this type of facial pain.” So now what??
On top of all the visits with many doctors/specialists came many trials on many different medications, including anticonvulsants, anti-inflammatories, steroids, muscle relaxants, antidepressants, etc. The only things that have worked as a band-aid over the last 5 years are opiates and Botox injections into select muscles of Hannah’s face (masseters, temples, and pterygoids) which involve 14 pokes in total every 3-6 months. Since Botox is not covered under insurance plans, each Botox appointment comes with a $400 bill. Hannah has had about 12 Botox visits so far. Without these band-aids, her jaw tends to flare up 2-3x a week, typically sending her to the emergency room where she spends 5-7 hours waiting for the proper pain relief and getting judged by the nurses and doctors for drug seeking.
In Hannah’s words…..It’s hard to explain in detail how much this pain has negatively affected my life and my health. It has cost me lots of time in visits with doctors/dentists, burned a hole in my wallet and my parents, and has stopped me from carrying out day-to-day activities and working a full-time job. I have been off work since the end of April due to the pain and have been unable to return due to the fact that the pain has not been properly managed and has taken a very hard toll on my mental health. The pain has prevented me from being a proper spouse and stepmom on days when my jaw flares up; I’m either in the emergency room or locked away in a dark room with my eyes closed, lying down with heat or ice on my jaw. My mental health has steadily declined over the last 5 years. The longer this has gone on, the more I have lost hope. It’s caused a deep depression, lots of anxiety, and lots of questions about whether or not I will ever be able to live pain-free without a crutch of some sort. The mental toll it has taken on me has caused suicidal feelings at times, which is extremely common in chronic pain patients. In fact, 1 in 10 people who commit suicide had signs or a history of chronic pain. All of this inevitably has taken a toll on the ones I love as well, as they have had to take on a caregiver role since the pain has taken over my life. Back in November of 2021, I was forced off work for a couple of months due to losing ~30lbs very quickly. This was due to the fact that I am simply unable to eat when the pain is bad enough, which has caused borderline malnourishment.
During one of Hannah’s most recent ER visits where I stayed with her, I came across the story of a young woman, also from Saskatoon, who a few years previous had been living the same nightmare as Hannah after a wisdom tooth removal. She encountered the same roadblocks as Hannah and basically told nothing could be done, and she needed to learn how to live with pain. She found The Piper Clinic in Florida and is pain-free today except on really cold days.
We have been in touch with this family, and Hannah has also had a virtual consultation with The Piper Clinic. Dr. Brian Shah is a TMJ specialist at the Piper Clinic in St. Petersburg, Florida, and he has agreed to take Hannah on as a patient. There are few specialists like this in Canada, the wait list is years long, and Hannah cannot live like this for much longer. Dr. Shah is extremely thorough and will spend 12 hours assessing her, doing more imaging, trying nerve blocks to see where she gets the most pain relief, and at the end of the day, deciding if she is a surgical candidate or not. There are 7 different possible surgical approaches.
The initial visit is estimated to cost around $8000 CAD. If surgery is required, we’ll be looking at $75000-$100,000.
We are reaching out to family, friends and strangers. This is the point of desperation we thought we would never get to but now have. Anything helps, and if you cannot donate, please share.