Back To Square One?

CPC device, oxygen sensor, mouth taped and mute dilator

Recently, my dentist has been taking countless trainings in airway prosthodontics, the study of abnormal breathing and its impact on someone’s health. During my most recent intense appointments with her, she told me she ordered a cardiopulmonary coupling device, a patented technology that establishes Sleep Quality from the analysis of the connection between heart rate variability and respiratory volume variability. I clearly have no clue what this means, but sure, I’ll do another sleep study, especially at home.

In order to, hopefully, alleviate some of my daytime fatigue prior to any surgery, my dentist recommended that I tape my mouth shut when I sleep as I’m a mouth breather. And that I purchase dilators for my nose, a small plastic device that opens my nostrils wider to increase my air flow, as my nostrils collapse when I inhale.

A week later, she called and told me the cardiooulmonary coupling device had arrived and I picked it up for the office. She wanted to me use it for 2-3 nights and then bring it back so she could analyze the data. I appreciated the less invasive feel of this sleep study. The recorder was oval shaped, 3” tall and maybe 2” wide. I hooked it to my chest, just below the collarbone, with an electrode. A cable clipped into it and was attached to a second electrode under my breast. I then had an oxygen monitor clipped onto my pointer finger and strapped to my wrist.

I was nervous that it wouldn’t show anything, then people would think I’m making this all up. That I’m not really as tired as I think I am. That I’m lazy. I’m exaggerating. I’m weak. I was happy that it came back to show that all 3-nights I had “clear evidence of sleep disorder”.

My sleep study indicted that for about 1/3 of the night, I had unstable sleep. It showed that I somehow end up sleeping on my back most of the night, even though I know I struggle to breath in that position and never go to sleep on my back. It showed how often I snore (rude!), although I’m told it’s more of a moan most of the time than a snore, which is common for UARS. But mostly it confirmed that I have moderate to severe sleep disordered breathing.

The red bars indicate "elevated unstable sleep". It also shows when I snore, how often I wake up and my sleeping position. 

I was more than happy, I was elated. This was real. I had proof and my doctor understood and believed me, whereas with the previous sleep study, that neurologist didn’t get it.

Here’s why.

My doctor, my dentist and others you’ll learn about below, do not think I have obstructive sleep apnea. They think I have something called upper airway resistance syndrome (UARS), which was first described in the 90’s. It’s a sleep disorder where the airway, behind the lower jaw, is narrow and can cause sleep disturbances. I recall back in 2016, when I met with surgeon #2, that he had diagnosed me with this. But I didn’t pay too much attention to it; I think I was far too overwhelmed with the idea of surgery.

      But this past year, I have been reading anything I can get my hands on with UARS. The symptoms are seemingly unrelated. And many are things I've spoken to doctors about with little relief or being told that "it's normal" or "there's nothing we can do". Below is a list of my symptoms that can be caused or exaggerated by UARS:

• Anxiety
•  Depression
•  ADHD
•  Chronic daytime fatigue
•  Cold hands/feet - I can be in hot yoga, 106 degrees, and my feet are ice cold
•  Irritable bowel syndrome – I’ll save you details, but I track my movements and somedays I struggle to eat due to excessive bloating
•  Slow eater – I typically get tired of eating before I’m actually full. My airway is so narrow that I take small bites and struggle to breathe when chewing, especially if my nose is stuffy (see below)
• Jaw pain from grinding my teeth
• Headaches
• Tinnitus (ringing in the ears)
• Chronic stuffy nose
• Post-nasal drip
• Laryngopharyngeal (throat and voice box) reflux disease - causes me to frequently clear my throat
• Neck pain - I unconsciously hold my head further forward than is healthy for my spine. This causes my shoulders to roll forward and causes near constant neck discomfort, frequent pulled muscles in my neck, shoulders and back and the occasional pinched nerve.
• Fainting - I've been diagnosed with vasovagal syncope, fainting spells, since I was a pre-teen. Perhaps it's related to this.

Research has shown that since I struggle to get enough oxygen into my body, that my sympathetic nervous system is overstimulated. This leads to my body to be in a near constant state of fight or flight as it thinks it’s under attack. My blood pressure is also borderline high, so I have 2 blood pressure machines at home, and I try to regularly monitor it. My blood pressure, in my opinion, can spike, seemingly randomly. Sometimes it’s after I eat, and I can see my shirt moving ever so slightly on my chest with each heartbeat. One night, my BP was 176/130 with no Vyvanse in my system, that was scary. Approximately 23% of people with UARS have low blood pressure. I guess I’m just trying to keep the doctors on their toes with mine being high instead.  

Researchers and doctors worry about heart attacks, strokes and aneurisms for a future with UARS. I do too.

When I met with my dentist to discuss my sleep study results, she also reviewed my latest CBCT scans. Remember that SARPE surgery last year to widen my palate? Well, it only widened it about 3.5mm. Not nearly what she expected. She sent me to meet with a new orthodontist in Philly, who is very educated in airway prosthodontics, and a new ENT in Annapolis.

My nostrils collapse when I inhale

I met with ENT #3, Dr. RM and he diagnosed me again with stenosis. Fabulous. Nothing was correctly fixed with either of the 2 previous surgeries, so here comes #3. The ENT performed an endoscopy, a procedure where he passed a small flexible camera up my nose and down into my throat, just feels like you need to sneeze. With this, he also agreed that I have UARS and a narrow airway. He also said it makes perfect sense why the CPAP would have failed. I very much appreciated the validation on that one. He confirmed another diagnosis; I have a large tongue. Which adds to my difficulty with breathing.  Surgery date will be discussed after I meet with the ortho, Dr. E which occurred a week later.

An 8am appt, 2-hours from my house. Thankfully, she makes the drive worth it as she and her staff are fabulous and comforting. Dr. E, technically ortho #3 as I had braces for a few years as a kid, knows her stuff and travels the world to educate other doctors. However, my warm and fuzzy thoughts of her faded a bit though when she confirmed what I was dreading. I needed my palate re-expanded and the braces started all over again. W! T! F!

It’s been a little over 2 weeks since I found out and I’m still not sure how I feel, which is odd because I’ve created my own wheel of feelings for my clients and I loooooooove discussing feelings. Am I Devastated? Pissed? Skeptical even if I can trust doctors to achieve what they say they can? Am I discouraged? Lonely? All of the above?

This Thursday, the 8^th of August, I will have my palate expanded again. This time it’s an in-office procedure called a MARPE, Micro-implant Assisted Rapid Palatal Expansion. The specific procedure I’m having done is called an MSE, maxillary skeletal expander, developed by Dr. Won Moon.

Dr. E will attach the expander to my molars and cement it in place. At some point I will receive both topical and local anesthesia. She will then take 4 screws and drill them into my palate. I will be awake for this. She swears it won’t hurt. I will have the expander in for again about 10 months. Once I’m fully expanded, I will be able to have the sinus surgery and will start the braces process over again. The doctors tell me this will stop my teeth from hitting and may help me breath enough so that I'd only need surgery on my upper jaw. 

I've also been diagnosed with severe tongue tie, who knew this was a thing in adult. I will need a frenectomy, a procedure where they snip the skin holding my tongue to my mouth with a laser. It's not bad, I had it for my frenulum behind my upper lip. You just smell burning skin for a few moments and then it's done. I may also need to work with a myofunctional therapist after surgery. A myofunctional therapist is essentially a physical therapist that will help me retrain my tongue muscles. 

The MARPE procedure isn’t covered my insurance. It’s $4,000 out of pocket. The Invisalign already cost me $4,300. Not to mention about $10,000 in other expenses...deductibles, co-pays and the many things dental insurance does not cover. I'm working to discuss with ortho #2 and #3 about who will take over the next phase of braces. It could potentially cost me another $6,000. 

I’ve also lost about $7,000 in wages the past year alone because of doctor’s appointments. I’m an independent contractor, so if I don’t see clients, then I don’t get paid. I have no sick leave, vacation, no employer paid retirement. It’s all me and the clients I see. It’s sometimes difficult to keep a regular caseload of clients with all the time off I need to take. I’ve been to my dentist’s office 7 times in just 2019.

Some days, it can also be extremely challenging to be mentally present for my clients. I’m a trauma expert, my clients don’t come to me to chat about the woes of keeping up with laundry and PTA meetings. They come to me for help overcoming a rape, childhood neglect, having watched someone die in a horrific accident just 5 feet away. That’s exhausting on the best of days for a therapist. I am grateful this work is an escape from my own life and allows me to be humble and give to others. But I’m human and my own struggles weight on me. I frequently have just my lunch break to make phone calls to doctors and insurance and return their emails. I see a client for 45 minutes, walk them to the door and the next client walks right back then. I do this to optimize my opportunity to earn a living, but it does not allow me time to play phone tag easily. This can be frustrating.

Right now, I try to practice gratitude as much as possible. I’m grateful for the support of Gary, my family and my friends. I’m grateful for the support and knowledge of my doctors. I’m grateful I am financially capable of taking on these medical bills, even if I really believe that insurance should pay for more things because it also means less money goes to paying off student loans and that I'm holding off replacing my dying car with a bumper that's held on with zip ties. I’m grateful that there is hope I’ll be able to breathe and finally feel rested. And come Thursday, I’m going to be very grateful for anesthesia and some ice cream that evening.