Background
For those who don't know, I had major orthognathic surgery on my upper/lower jaw, chin, nasal passages, and tongue tie on March 7, 2019. Prior to that, my health took a dive in May 2015 when I injured my neck (bulging disc/pinched nerve). In the weeks that followed, instead of feeling better we saw more symptoms developing: regular painful headaches behind my left eye, tinnitus, and bouts of mild vertigo that made it impossible to drive very long without feeling dizzy. I also started experiencing crippling bouts of deep fatigue and weakness that would come out of nowhere (after numerous tests, I was later diagnosed with fibromyalgia). GI issues also worsened, which I've shared about in a previous post.
From May 2015 - March 2019, every day was spent managing some or all of these symptoms while trying to handle everything else on our plates (with SO much help from my husband Jason, I can never begin to deserve that man). Amazing friends and family were also lifelines on the worst days.
After years of unexplained symptoms, a dentist with specialization in treating airway issues discovered that my jaw was receding and compressing my airway to 1/10 of its normal size - she described it this way: "Imagine trying to breath through a straw, but someone is pinching it almost completely closed. That's literally what is happening to you."
As we began the process of preparing for surgery, every specialist I met with said the same thing: "I honestly don't know how you are breathing right now." "You have one of the worst airways I've ever seen." "This surgery is literally going to change your life."
The feeling of relief after years of mysterious and debilitating symptoms was overwhelming.
We weren't sure if or how much jaw surgery would help my overall health. But since stress has been identified as a definite trigger and a restricted airway creates extra stress on the body as the jaw/neck/shoulders are constantly fighting to hold it open, it certainly seemed possible that I would find some overall relief. So we prayed, waited, and on March 7, 2019 we drove to Lexington for the procedure.
Surgery and Recovery
Here is the Facebook post that Jason shared 11 days after surgery (March 18, 2019):
Donna underwent a double jaw and chin advancement on March 7 at UK hospital in Lexington. The surgery was successful in moving her jaws and chin forward in order to resolve obstruction to her airway, which was about one-tenth the width of a normal person (imagine breathing through a straw). This obstruction had resulted in various chronic ailments, including severe sleep apnea.
The results of the surgery were successful. The attached before/after picture shows the immediate widening of Donna's airway. She has already felt significant relief and she has retired her sleep apnea machine for good. The surgeons also found an unexpected polyp in her left sinus cavity about the size of a gummy bear.** They removed this polyp, which was benign, and Donna has already observed relief from chronic headaches and tinnitus on that side of her head.
Donna has been recovering in line with expectations. We spent one night in the hospital to get her pain under control. We were discharged the next day and have been recovering steadily at home since then. Her jaws were not wired shut, and she was encouraged to start talking within the first 24 hours. She has a splint in place to keep her jaws aligned for the first 2-3 weeks.
I spent the first week blending her meals and feeding her with a syringe and catheter. Pain levels have slowly improved each day. The cocktail of prescription meds really messed with her existing stomach problems. But we are now on over the counter meds and diet and digestion are almost back to normal.
After her follow up appointment with the surgeon on Friday, she was encouraged to keep stretching her jaw more each day. She is now strong enough to be up and moving around and making her own liquid meals some of the time. Her cheeks, mouth, and chin are still numb from strain on her nerves, but also getting better each day.
We have been overwhelmed with love and support before, during, and after the surgery. My parents were superstars and watched our kids for 9 days. The cards, flowers, meals and kind words have really gotten us through this hard time. Donna has told me this is the hardest thing she's ever done, but she remained determined to see this through because of the relief it will bring. It is no exaggeration to say that her life will be forever changed and we pray this relief will continue to live up to expectations.
** The surgeon later corrected himself and said the polyp was more like the size of a plastic Easter egg, almost completely filling my left maxillary sinus area.
Before/After Photo after surgery, shown to us before being discharged.
You can see the immediate difference in my airway.
What Jason doesn't mention is that he sat up with me the entire night after surgery to suction the pooling blood in my mouth so I wouldn't choke on it while I slept. That when we got home, he kept track of my medication schedules, blended soups and smoothies and then fed them to me using syringes and catheter tubes which he would then wash before preparing the next dose of medication, water, or liquid food. And he held me when I cried.
The recovery was hard, y'all. Really, really hard. The pain was unbearable at times, and it lasted for several weeks. It was by far one of the most difficult physical, mental, and emotional struggles that I've ever faced.
I will post a link to some of my early post-op recovery photos here - be aware, some of the early recovery photos might be difficult to view. It's hard for me to look at them for very long myself.
The first year after surgery was kind of a blur. Below are the highlights related to my heath:
One Year Post-Op (March 2020) Observations/Changes
- Still very numb bottom lip (still is almost 22 months later), occasional drooling is inevitable
- Braces would be needed for several more months to finish the job of straightening/correcting bite and jaw alignment
- No noticeable tension headaches behind my left eye or any tinnitus for the first year post-op
- No vertigo from March - October! Unfortunately, an ear infection triggered it again that fall, but after the infection cleared up so did the dizziness for many months
- Fewer/less frequent bouts of deep fatigue, usually could be controlled with rest and not overexerting myself physically, plus keeping protein snacks handy
- Jaw was still very stiff and still hard to fully open and chewing hard foods really difficult. I got into the habit of cutting up food into small bites.
- A follow up sleep study showed that my severe sleep apnea had been fully resolved! (46 sleep interruptions per hour - severe - reduced to 0.2 an hour! Incredible.) The most pressing need (no pun intended) was addressed and corrected. I could breathe and maintain healthy oxygen levels at night without a machine. Woop woop!
- I was offered an elementary academic support assistant position at my kids' new school: a physically and mentally challenging job at times, but deeply rewarding. I've loved working again and being part of a team of amazing teachers and staff.
- I began grad school classes in August 2019 to resume studies for a masters degree in counseling with the goal of eventually becoming licensed.
- I began to slowly see improvements with my GI issues and could even start eating small portions of raw fruits and vegetables again after almost a year of not being able to tolerate them
- By December 2019, working full time, going to grad school, and maintaining our home/church commitments began to take a toll on my energy and overall health. (Looking back, I realize that I was waaaay too ambitious to try to jump into so many new changes so quickly.) I made the decision to put grad school on hold indefinitely and instead focus on family, church, and my growing love of teaching and working in education.
Then...2020
In March 2020, the whole world was hit with a global pandemic. The week that it was announced that schools and businesses were closing down, our son Emmett got extremely ill and had to be hospitalized with viral pneumonia. He was unable to be tested for COVID-19 because there were so few tests available at that time. We were worried that if he didn't have this new novel coronavirus, he might get it while in the hospital - no one seemed to fully understand how this new disease behaved, and we were sick with worry. Thankfully, after two nights in the hospital Emmett's oxygen levels stabilized and could come home to finish recovering.
I think it would be unnecessary to talk further about how stressful every aspect of life has been in 2020, since every person reading this post is living through the same strains and trials - and some to a much, MUCH greater degree. Almost everyone I know is coping with levels of stress and strain that they've never experienced before, including myself. And it's been such a LONG, weary season.
One small bright spot of 2020: to cope, I've rediscovered my love of sculpting/crafting miniatures. It's one of the few activities I can do for hours and not feel sick, dizzy, or overly fatigued afterward - and I've found that those creations generally bring encouragement and joy to others too.
It makes me smile every time I look at it.
Looking Forward
Unfortunately, I've recently had to admit to myself that more and more of my old symptoms have started returning with greater frequency and intensity:
- More frequent bouts of deep fatigue
- More frequent muscle/joint pain
- Brain fog
- Jaw/TMJ soreness
- Occasional headaches behind my left eye and tinnitus have returned
- Recurring nerve pain from my old neck injury, even after weeks of PT and other treatments
- The vertigo returned just before Christmas. It isn't bad enough to make the room spin, but it puts the world on a slight tilt and makes it harder to think and speak with clarity. PT exercises have helped to control it better, but lately it seems to get stirred up more and more easily.
My doctor recently told me that I might need to check with an ENT to be sure that the sinus polyp hasn't returned. And my dentist said that though the surgery made structural corrections to my jaw, my jaw/neck/shoulder muscles still want to revert back to unhealthy habits which are likely aggravating old issues (also, stress is likely worsening it). More consistency with strength exercises, stretching, and taking steps to minimize stress wherever possible are necessary to get these issues under better control.
Yet, I am Thankful
So, do I regret having jaw surgery? No way. Even though surgery didn't resolve all of my issues (I was warned beforehand that it wouldn't), it corrected a serious underlying problem that could have led to long term risks and continual stress on my body. Today, I can usually go on long walks without feeling completely spent. The 7,000-10,000 steps I walk a day at my job would have been impossible two years ago. It's miraculous.
My walking buddies. My people.
I've been able to go on adventures with my family again. I've explored hiking trails in Appalachia with my husband (impossible two years ago). I can sing at church again with him, something I had to stop doing for a long time because it made me so weak and dizzy.
Hiking on our anniversary trip to Berea, KY
June 2019
I've gotten to spend so many school days working with some of the sweetest kids and most incredible teachers around. It's been a joy and a privilege to be part of helping students grow and learn.
I am thankful for each breath, each small victory, each shared laugh with a friend, each opportunity to know others and to be known. I am thankful for each fleeting moment of health and strength. I am thankful to feel more like my old self again.
But I am learning now that I also need to grieve and let go of the expectations I once had for myself, and I need to come to terms with the limitations and the body I've been gifted with today. It's a painful process. Sometimes I fall into dark moments of disappointment, regret, and depression. Living with chronic pain and illness Wears. You. Down. But God's mercies are new each morning, and with each day He provides moments of love, beauty, and joy. If my eyes are on Christ and others, I can usually see them and it's easier to rejoice and be glad. If instead I keep my eyes on myself and on my pain and limitations, those moments are missed and the disappointments are heavier.
The greatest gift that has come out of this long season of health issues is that God has become so much more real and deeply tangible to me over the last 5.5 years. He is so near, especially on the hardest days. I've come to know Him as more than my Savior and Lord - He is also my Friend who has walked with me through some of the darkest valleys of my life - places no one else could have gone. He is truly a Rock, the Great Comforter, perfect Strength in my great weakness, and the only source of Eternal Hope.
I'm not sure what the next year will hold, but He does. And I am thankful.
November 2020
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