22 Months After Double Jaw Surgery

Hello friends, it's been a while since I've posted or given an update on my post-op recovery after double jaw surgery. I think I'm ready to share it now.

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. 

A recent project. 

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

 

Standing on the bank. 13 days to go.

Jaw Surgery Countdown: 13 Days.

My emotions are all over the place. Eagerness. Avoidance. Gratitude. Grumbling. Impatience. Dread.

The effects of stress are definitely making preparations more difficult. The tinnitus is back, as well as the tension headaches, muscle/joint aches, brain fog, and deep fatigue. Each day that brings us closer to the Big Day reinforces why we are taking this difficult step in my long term recovery.

The countdown has begun. February has been a constant stream of appointments, check ups, phone calls, making preparations, and getting affairs in order for myself and the family before entering hibernation/recovery mode. Bills paid? Check. Dependent family members? Housing/care arranged and taken care of. Hospital bag? Packed. Bulk cooking/juicing/fruit and vegetable purees stockpiled in the freezer? Check-a-check.

Juicing berries, apples, mango, and spinach for smoothies.

So pretty!

Planning all liquid meals has actually not been as much as a shock/stressor as it could have been. Since being diagnosed with gastroparesis in December (after a scary trip to the ER with chest pain that led me to believe that I was literally dying), we've had to completely change my diet to accommodate the stomach's impaired ability to digest hardly any red meat or unfermented dairy, raw fruits and vegetables, and only limited amounts of fat and fiber in one sitting.

Typical GP friendly breakfast on a good day.

Each ingredient carefully measured and recorded

to ensure enough nutrition and to prevent GI distress.

I would say that on an average day, about 30% of my diet is now liquid or creamed foods. Planning to transition to a 100% liquid diet has taken a lot more research, calorie counting and nutritional planning to be sure I'm eating enough to heal and stay strong. Gastroparesis cookbooks have been hugely helpful in finding recipes, like this one, this one, and this one.

Sweet potatoes, chicken, and carrots,

Pre-liquified.

Now my freezer is stocked with pureed soups and entrees, bone broth, and vegetable blends to be heated up and served in a squeeze bottle, and fresh fruit juice cubes to be added to smoothies and applesauce (which will also be served in a squeeze bottle). 

While it might seem like a bummer to discover yet another condition to be accommodated, the timing of everything has actually been a mercy. At my pre-op consult on Friday, the surgeon said that discovering the gastroparesis before surgery was significant and will impact the way that the anesthesia and post-op care will be managed. Besides, it's helpful to put a name to a condition that I believe I've lived with to some degree for many years. I'm curious to see if the correction of my jaw and tongue tie will have any impact on digestion and the severity of GP symptoms. (It's part of why I'm documenting all of the nitty gritty details of this journey - to keep a record and possibly to help or encourage others who might have a similar condition.)

Christian and Hopeful standing

before the Celestial City

When facing such a significant and invasive surgery, it's easy to feel fearful and uncertain about the future. I've woken up several times in the early hours of the morning with my head swirling and my palms sweating, praying for peace and wisdom and trying to think of ways to make the next couple of months of recovery go more smoothly.

The kids and I recently read through an abbreviated version of The Pilgrim's Progress for school. Christian's journey to the Celestial City is fraught with danger, doubt, and fear. Every time you think he's surely endured the worst thing on his journey, another even greater trial awaits him. Nearing the end of the story, Christian has already survived a bloody hand to hand battle with the demon Apollyon, passed through the terrifying Valley of the Shadow of Death, and even escaped the giant Despair in Doubting Castle.

At long last, he and his friend Hopeful are now standing on a riverbank and so close to the gate of the City of God that he could almost taste it... but there was still one more difficulty to pass through before he could enter: the River of Death.

"Now I further saw that betwixt them and the gate was a river; but there was no bridge to go over: the river was very deep. At the sight, therefore, of this river, the pilgrims were much astounded; but the men that went with them said, "You must go through, or you cannot come at the gate."

"The pilgrims then began to inquire if there was no other way to the gate; to which they answered, "Yes, but there hath not any, save two, to wit, Enoch and Elijah, been permitted to tread that path since the foundation of the world, nor shall until the last trumpet shall sound.

"The pilgrims then – especially CHRISTIAN – began to despond in their minds; and looked this way and that, but no way could be found by them by which they might escape the river. Then they asked the men if the waters were all of a depth? They said, "No"; yet they could not help them in that case, for said they, "you shall find it deeper or shallower as you believe in the King of the place."

One final act of faith. Pass through the dark waters, with no certainty of its depth or outcome. Then emerge on the other side and enter in.

At the risk of sounding overly dramatic, I feel a bit like Christian toward the end of his long and harrowing pilgrimage to the Celestial City. This has been a long journey of pain, uncertainty, trials, joy, sorrow, unanswered questions, and waiting.

"They then addressed themselves to the water; and entering, CHRISTIAN began to sink. And crying out to his good friend, HOPEFUL, he said, 'I sink in deep waters, the billows go over my head; all his waves go over me.'

"Then said the other, "Be of good cheer, my brother; I feel the bottom, and it is good." Then said CHRISTIAN, "Ah! my friend, the sorrows of death have compassed me about; I shall not see the land that flows with milk and honey. And with that a great darkness and horror fell upon CHRISTIAN, so that he could not see before him; also here he, in great measure, lost his senses, so that he could neither remember nor orderly talk of any of those sweet refreshments that he had met with in the way of his pilgrimage. But all the words that he spake still tended to discover that he had horror of mind, and hearty fears that he should die in that river, and never obtain entrance in at the gate; here also, as they that stood by perceived, he was much in the troublesome thoughts of the sins that he had committed, both since and before he began to be a pilgrim."

In His mercy and kindness, God has used this season to humble me, to expose my weaknesses and false beliefs of self-sufficiency, and to dig down to the root of my identity and security. He has (and still is) pruning away the things that I have sought to fulfill and define me but ultimately have been found wanting. He has reminded me of who I truly am: his child. Limited, but loved. Dependent and weak, but strong in Him and Him alone.

God in His mercy has provided so many people along the way to speak grace and truth to my weary soul. Even in these last couple of weeks as the surgery looms ahead like a dark valley of uncertainty, family and friends have taken the time to share truths that the Lord taught them during their own journeys through dark and uncertain valleys.

 "Ah, brother," said he, "surely, if I was right, he would now arise to help me; but, for my sins, he hath brought me into the snare, and hath left me." Then said HOPEFUL, "My brother, you have quite forgot the text where it is said of the wicked, 'There are no bands in their death, but their strength is firm; they are not in trouble as other men, neither are they plagued like other men'.

"These troubles and distresses that you go through in these waters are no sign that God hath forsaken you; but are sent to try you, whether you will call to mind that which heretofore you have received of his goodness, and live upon him in your distresses." 

"Then I saw in my dream that CHRISTIAN was as in a muse awhile, to whom also HOPEFUL added this word, "Be of good cheer, Jesus Christ maketh thee whole "; and with that CHRISTIAN brake out with a loud voice, "Oh, I see him again! and he tells me, 'When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee.'" 

Thank you, friends and family. So much. I look forward to celebrating with you all once this next step is over.

Hello, jaw surgery.

The biggest event on our horizon is the long awaited orthognatic (double jaw and chin) surgery to correct my obstructed airway and TMJ disorder. We hope it will lead to better sleep and health, as well as less pain and fatigue both now and in the long term.

Braces are a necessary step for proper teeth alignment prior to orthognatic surgery.
My resemblance to the Incredibles' babysitter is uncanny. #iamKari

The procedure has been scheduled for March 7th (seven weeks away!). I'm meeting with my dentist, orthodontist, and maxillofacial surgeon in a few weeks for my final checks before surgery. Then it's Go Time.

(This video below is a great explanation of the procedure, and includes a patient testimonial if you are curious or interested in learning more.)



Something about having a set procedure date made things feel a lot more real this week. In an effort to quell anxiety (nervousness = busyness), I've started making preparations for post-op care.

Here a list of the recovery supplies I've collected so far:

- Wedge Pillow to stay elevated after surgery
- Nutri Ninja blender
- Hamilton Beach Big Mouth Juicer
- Homegeek Water Pik (for keeping braces/teeth clean since flossing will be impossible)
- Essential oil diffuser/humidifier (interesting article by Mayo Clinic on EOs and post-op recovery)
- Ice packs and heating pad
- Dry erase board/markers (to communicate for first couple of weeks)
- DVDs and comfy pajamas

One of the trickiest considerations with jaw surgery recovery is nutrition: the jaws are banded shut for 4-6 weeks while the bones heal, which means everything going in must be in liquid/pureed form. I've begun experimenting with various recipes for soups, smoothies, juices, and basically anything that can be consumed through a condiment squeeze bottle. I hope to write another post soon with some of the best recipes I've gleaned from cookbooks, YouTube, and the interwebs.

EDITED 2/13/19: I was told at my pre-op appt last week that I will NOT be wired/banded shut after surgery (YAY) but will still be on a liquid diet for about a month (BOO).

Breakfast. Lunch. Dinner.

Rinse. Repeat.

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Some may be wondering if this procedure is medically necessary to correct my issues, or if more conservative and holistic treatments have been tried first to help improve my airway and long list of medical issues. The answer is yes and yes.

I've been battling poor health for several years now, and it has been gradually worsening over time. Over the last four years, I've been treated by several great chiropractors, massage therapists, physical therapists, and doctors with only limited success. Manual manipulations, daily physical therapy exercises, dry needling, craniosacral and therapeutic massage, splints, essential oils, supplements, eliminating huge categories of inflammatory foods from my diet - you name it, I've tried it. All with little/no lasting relief, I'm sorry to say. It is now clear that there are no other viable alternatives left, and so we can proceed with confidence knowing that this is the best option for my long term health. (I will also be having a small outpatient procedure later to correct a tongue tie, but the tie is minimal and the recovery will be much, much easier.) 

If you believe you are suffering with significant jaw issues, contact a dentist or orthodontist who specializes in airway/TMJ disorders for a consult. They are the best place to start in getting an assessment, and they will likely have several conservative and effective treatments to try first before considering surgery (according to my orthodontist, 85% of people he treats with TMJ/jaw issues can resolve their problems without surgical intervention).

******

Thank you all for your support, prayers, and encouragement as we take this crucial and necessary step. I will try to share details as I'm able throughout the process in case it is helpful to others who are considering or needing orthognatic surgery.

When I Don't Feel Like Singing Anymore

Today's a hard day. Singing is now physically painful, so I've had to stop for a while. Maybe until after jaw surgery, which I pray will help open my airway and relieve the strain it puts on my body.

We were asked in Sunday School today to share what God has been teaching us over the last year. These two words came to mind so quickly it brought tears to my eyes: Surrender. Trust.

This song by the amazing Eilidh Patterson resonates so deeply today. He is near. He will redeem.