Airway Journey Recap : Part One
The journey is not even close to being over, but it was time for a recap!
Sydney confesses to her phone camera that she is tired, drained and worried.
Keeping You Up-To-Date
For those of you who joined us recently, and old friends who have been here from the beginning, we have a mid-journey recap. We're sharing this sum-up in two posts. We've written them in lay terminology, with very little medical jargon and data, so they can be easily followed. Most of this information is already available on airwaydocumentary.com, in various blog posts and the trailer, but we thought it might be helpful to sum it up in a two-part message.
The Way We Were
Sydney began her journey well before filming for the AIRWAY documentary. She had been experiencing fatigue since she was a toddler. Her family sought answers early on (allergies?) but did not find any reasonable diagnoses or solutions. For years, her condition became the status quo. It was just the way Sydney was.
Dr. Avis, a life-long learner, began to explore new ways in which Sydney may be treated. He began to focus on the airway and soon became an airway centric dentist. He started using orthotropics instead of orthodontics to help expand the palate and keep airways open. He flagged mouth plaque and inflammation as a cardiovascular concern not just an oral issue. Some of his patients took his advice, saw cardiologists, and saved their lives (we will circle back to this later in the documentary.)
He became a proactive and preventive dentist - using early intervention to catch sleep and airway issues. He added new services to his practice and educated his staff in recently developed treatments. These professional steps were critical because Dr. Avis applied all this new knowledge to his own daughter, and patient, as he sought a solution to her challenges.
First Steps on a Long Journey
In 2015, Sydney took her first step with myofunctional therapy. Jeanne Morro, a certified orofacial myologist, helped Sydney retrain her lips, mouth, tongue and jaw to work more efficiently. She had Sydney focus on nasal breathing instead of using her mouth to breath.
These exercises made a difference and may have kept Sydney from declining further, but they weren't enough to overcome her challenges.
Hang In There
In early 2016, Dr. Avis consulted with Dr. Bill Hang, DDS, a singular and experienced dentist who rebuilt his entire practice so he could prevent and repair airway centric disorders. He is a top doc in this area. Dr. Hang reviewed Sydney’s case data and came to the immediate conclusion that Sydney would be best served by jaw surgery. A pretty radical solution...
Beginning To Roll With It
In late 2016, we found out about Sydney’s story and decided to document her journey. It was just a beginning. We weren’t sure if the story was strong enough.
Would there be a compelling middle and end?
Scoping, Probing, Sleeping, and Trapped
Our cameras went with Sydney in January 2017 as she visited Dr. Steven Park, an innovative ENT. His scopes showed that Sydney’s airway was not as restricted as expected when sitting or reclining.
He could help her breathing with a nasal procedure. But he thought it would be a 10-15% improvement. He recommended a sleep study even though he wasn't totally confident it would reveal the source of the issue.
A month later, Dr. Gina Pritchard GNP, head of the Prevent Clinic, led a medical team that tested Sydney head to toe. Dr. Ford Brewer, cardiologist, and Dr. Christine Hwang, naturopath, rounded out the team. Sydney tested well.
There were no significant issues or concerns.
The team did acknowledge Sydney's lethargy. There was a discussion about how stress and diet could be exacerbating the problem.
In June, Sydney took a sleep study supervised by Dr. Ahmed Fadil, head of the North East Insomnia and Sleep Center. Surprisingly, Dr. Fadil reported that Sydney experienced mild sleep disruptions. She didn’t really meet the standards for obstructive sleep apnea.
Dr. Fadil acknowledged there was something more going on. Was Sydney narcoleptic?
Back in his office, Dr. Avis revisited Dr. Hang’s assessment. If Hang was correct, Sydney’s jaw was recessed and blocking the air when she slept.
The reduction of the airway did not replicate in the traditional sleep study. Why? He wanted to explore every option to spare his daughter.
But Sydney felt so trapped by her condition, unable to take advantage of her young age and smarts, that she wanted something to provide immediate relief, even if it meant surgery.
There's An App(liance) For That
Dr. Avis decided to fashion a test mouth appliance that would bring Sydney’s jaw forward a few millimeters. This would provide Information on how much the jaw was involved in the Issue. Sydney tried the appliance. She was not happy with it. It was uncomfortable and restrictive. She couldn’t wear it long enough or sleep with it to gauge its effectiveness.
In January 2018, Sydney visited Dr. Michael Gelb, DDS. Dr. Gelb is the co-author of GASP, a definitive book on airway centric disorders. In GASP, Dr. Gelb and Howard Hindin, DDS, detail how an open and unrestricted airway is key to good health and development.
A restricted airway, they explained, often causes the issues Sydney was experiencing.
Dr. Gelb Is known for his custom dental devices (ACG Airway Centric System) that open the airway. These more comfortable appliances have been excellent solutions for patients like Sydney. Dr. Gelb measured Sydney and fitted her for two appliances (day and night).
Sydney began using these devices as soon as they arrived. She was desperate for this to be a good solution. Although she felt better the first night and day she began experiencing inconsistent results. Some days she felt well-rested and others totally exhausted.
Dr. Gelb adjusted the appliances and ordered a home sleep study to compare to Dr. Fadil's study. This study would show if there was an improvement when using the device. Sydney was sleeping better but Sydney still felt tired most days. Dr. Gelb was going in the right direction but how much further was there to go?
Variable Heart Rate with Hindex
At this time, Sydney took a heart rate variability (HRV) test given by Dr. Jeff Hindin, DDS. Dr. Hindin uses the HindexRV system (an FDA approved device he developed) to produce data on the physiological effects of jaw position, appliance efficacy, and other dental factors. A high HRV is a sign of good health. Lower HRV indicates a poor adaptation to stress and physiologic dysfunction.
Sydney’s was tested with and without the Gelb appliance. Her results with the device showed a higher HRV. But it was not as significant as hoped. This confirmed Dr. Gelb's findings but It seemed that Sydney might have another issue that needed to be corrected.
East Meets West
In November 2018, Sydney met with Dr. Naina Marballi, Ayurvedacharya B.S.A.M., an ayurvedic professional who has been working with Sydney on diet and stress. Sydney was a conscientious follower: eating cleanly, exercising regularly, and meditating daily.
These practices made Sydney feel better but, again, the results were inconsistent.
Standstill or Surgery?
In the early spring Sydney was beginning to conclude that surgery may be the only way she could find relief from the relentless exhaustion. Time was slipping by and she was concerned that her life was at a standstill. She could not keep a job or embark on a career, she didn’t socialize as much as others, and although she was an optimistic, cheerful person, she was withdrawing more to avoid being cranky and irritable. How would she ever have a full life or meet her goals. Career, marriage and children seemed like a far off, foggy dream.
An additional concern was that there was no guarantee that a procedure would solve truly her problem. Dr. Avis had collected anecdotal evidence showing that surgery worked for others like Sydney but it was subjective. Where was the objective clinical data? Where were the metrics? Did a before and after snapshot exist?
Stay tuned...there's more! We will continue the journey in the next blog post. If you are experiencing similar issues please connect with us! We plan to interview more people. Fill out the contact form so we can learn more about you. The battle to breathe has only just begun.