chronic-illnes

Jaw Surgery

weatheringchiariLeave a comment
This is me coming to from anesthesia.

Thank you for praying for me. The jaw surgery went very well with no complications, and I was able to go home the same day. About 5½ months ago, I yawned and my jaw popped and became stuck open. I was able to force my mouth closed (I know now not to do that in the future 😅). I went to the dentist, my doctor, and an ENT, but they all told me it was outside their specialties. I’ve only been able to open my mouth about one and a half fingers wide. It’s a type of locked jaw.


It wasn’t as bad, but a few years ago I had something similar happen to my jaw (also from a yawn) and was sent to an oral surgeon at OHSU. Since it was still within the timeframe, I was able to see the same oral surgeon as before. He measured my jaw opening, which was much more restricted this time. He knew exactly what the problem was and how to fix it with a relatively small procedure. I told him I was so happy he had a plan because I wasn’t sure who I would go to next. He smiled and replied that he was it.


The surgery has an over 80% success rate, but it really needs to be done within six months to work best. Insurance wasn’t helpful, so I pushed to get in about three months into this and had the surgery at 5½ months. It was close, but getting in felt like an answered prayer. I’m very hopeful it will work. The surgeon told me he has never had to repeat one of these procedures.


Here’s what they did: I was placed under sedation rather than general anesthesia because the surgery was only about 30 minutes. Anesthesia didn’t want to risk the complications of putting me fully under, especially since I would have needed intubation and my mouth wasn’t opening all the way. There was a lot of logistics involved because of my medical history—I’m allergic to some medications they use with anesthesia, and the fusion in my neck (plus the hardware) made them extra cautious. If there had been an emergency need to intubate, they had a special “blade” type tool ready. I didn’t ask for more details on that one.


The plan was to start with sedation. The surgeon told me I would be asleep and wouldn’t remember anything. But when his team came in, they said I would be awake enough to be aware, talk with them, and respond. I really didn’t want to be awake, remember anything, or feel any pain. They promised they would watch my body for signs of distress and adjust the medications as needed.


It was a minor surgery, so it was just my mom and me at the hospital. We prayed together before leaving the house. I had no idea what to expect because I’m used to much higher-stress, more complicated surgeries. We thought it would be easier with fewer people there so it wouldn’t be as triggering for me. I wasn’t prepared for the whole team coming into my room at different times for introductions. It makes sense that it’s standard procedure, but it brought up a lot of emotions and made the two hour wait in the prep area feel agonizing.


When I was finally taken back to the surgical room, I was more than ready. They tucked me in with warm blankets and gave me the anesthesia. The surgeon explained that they were going to take really good care of me. He said it was a simple procedure compared to the surgeries he usually does and that my jaw would have relief soon.


They inserted two needles into my jaw joint, drained the inflammatory fluid, and irrigated it to cleanse the joint. Then he dislocated my jaw and repositioned it correctly. The joint was filled with saline to keep it in place because it was misshapen. The surgeon told me to think of it like a balloon that needed to be refilled. Finally, he injected a steroid into the joint to help with swelling. So in the end, I just have two small needle marks by my ear and a very tender mouth from all the stretching and repositioning.


A few weeks before surgery, the surgeon squeezed me into his schedule and gave me a steroid injection in the joint to help with the pain while waiting. It took the edge off, but I still couldn’t open my mouth much. A week before surgery, I could feel it starting to wear off.


I remember waking up in a room with a box of tissues in my lap, weeping. I’ve never come out of anesthesia without turning into an emotional wreck. I get super gushy and love everyone. Once I became aware of what I was saying, I was crying to my mom about how nice everyone had been. When I got my bearings, she took the tissue box away and we laughed. We’ve been through this six times now—wisdom teeth, tonsil removal, and brain surgeries.


I had to stay in the hospital a few extra hours to get my pain under control. When I came home, a dear family friend had a homemade dinner waiting. I ate some cake, fell asleep on the couch, then woke up later and had some pasta. I’m on a very soft food diet for the next two weeks and doing a ton of icing on my jaw. The doctor said ice will bring the most relief.


The theory is that having C1 removed and not fused, with undiagnosed hEDS led to instability in my neck. Then four months in the the full cervical collar neck brace caused my neck muscles to weaken, which threw my jaw out of place. The oral surgeon told me this is a common issue for young women with hEDS.
I’ve also been having horrible vertigo—worse than I’ve ever experienced. I went to the ER a couple of weeks ago, where they did scans and gave me some meds. I’ve had the Epley Maneuver (or as they call it, the “Barbecue Maneuver”) done three times now, and it has helped significantly. It’s hard to know whether the vertigo is coming from my jaw, my neck, migraines, the loose crystals in my ears, or all of the above—it’s all tangled together.

Hopefully my body starts to calm down and the symptoms ease up. I’ve also had very blurry vision and double vision, so I’m in the process of getting a referral to the Casey Eye Institute for a neuro-ophthalmology evaluation.


It’s been a rough few months with a lot of pain and having to adapt to life with very limited jaw movement. But as soon as I woke up from surgery, I could open my mouth almost normally again. It’s still swollen and aggravated (there may be some saline still trapped from the flushing), but as it heals I should get even more movement. I was expecting a lot of bruising and maybe scabs, but you can’t even see anything. I just have a small Band-Aid. It feels like a tender mosquito bite. I threw up last night from pain, but sleeping with an ice pack is making it manageable.


There are so many things to be thankful for these last few months: being able to call my Uncle Frank (a retired dentist), who helped us make a plan and get on the right path; so many church family and friends praying; and a home-cooked meal waiting when we got home. 💗
It’s been a hard-won lesson, but there’s always joy and peace to be found in the waiting—whether you’re waiting for healing, surgery, or something else that causes that deep longing in your heart. God is always there. I’ve said so many prayers that felt like echoes of previous ones, like I was knocking on a worn-out door in Heaven. But even when the wait is long or the answer doesn’t come right away or in the way we expect, God is walking with us through this complicated journey we call life. Lately, the story of the Shepherd and the 99 has been rattling around in my mind—maybe because I’ve felt like that one lost sheep. Not by choice, but because of circumstances.

Chronic Illness can cut you off from what you know. It robs you of your strength and makes the simplest things, like getting ready to leave the house, feel like mountains. It’s isolating. It’s giving me time to know my Shepherd. For when I walk through the Valley of the Shadow He is still with me.

Blessings,

Shae

Psalm 23

Two Months Post-Op: Prayers, Delays, and The Surgeon’s Good News

weatheringchiariLeave a comment

Thank you everyone for praying for my appointment with the neurosurgeon in Colorado. The prayers were needed. Travel was hard on my body.

We flew Sunday and rested Monday. Tuesday was appointment day. We were up at 4:30 a.m. our time to take a Lyft to the clinic across from the hospital for x-rays. It had to be done early so the radiologist could read it and send it to the surgeon to review before our appointment. Usually, I would get the scans done here and send them over ahead of time, but the office missed it.

After that, we walked to Starbucks to wait three hours for the neurosurgery appointment. We spent the time organizing my symptoms, notes, my questions, and questions from my physical therapists and neurologist.

After sitting in Starbucks for hours, we finally went across the street to the hospital. When we walked into the clinic, the receptionist turned around and called for a nurse. The nurse ran around the corner and said the surgeon was called into emergency surgery and I would need to come back on Thursday.

Right away, my mom and I said in unison, “We flew from Washington.” There was a scurry around the corner, and we waited a few minutes for a nurse to come and say that we could come back at 3:30.

We went back outside and had to figure out what to do while we waited. We didn’t want to take another Lyft just to come back later. We walked around a bit and then ended up back at Starbucks. It became a very long and exhausting day. I thought it would take up the morning and early afternoon, and then I would have time to rest before we traveled back home.

Finally, the time came to meet with the neurosurgeon. He is pleased with my progress. My scar is healing very well. The x-rays show that all the screws are in place and exactly where they need to be. We talked through my symptoms and how to treat or monitor them. We talked through the scary symptoms that sent me to the ER at OHSU. He had a fresh take and thinks they are related to post-surgical complications, not nerve damage. Most of the symptoms, he thinks, can be managed by medication and physical therapy. It was really good news and an answer to my prayer. Thank you everyone for praying with me for healing and through this very stressful time.

This is the most recent x-ray I had done in Colorado. The curving in my neck is from surgery and being in the brace. The brace is to keep those screws in place, while they solidify into place. I will do physical therapy in the future to strengthen and straighten the neck. The second screw going down is the one that gives me chills to look at 😬

I’m now able to lift 10 pounds and can start weaning off the neck brace. My neck muscles are very weak, so it’s going to be a slow process. The brace has a knob in the front that you can pull up and twist to adjust it up or down. Right now, the brace is supporting my head. During the day, I’m going to start turning the knob to make it loose, and then when my neck gets fatigued, adjust it back up (beginning with 2–5 minutes).

When my neck gets a little stronger and used to holding itself up again, I’m going to move to a soft collar, which doesn’t support your head as much but still protects it. Eventually, I will work to one of those travel pillows—not for support, but to keep my head movements in range.

Physical therapy is starting slow. I’m going for walks daily with my walker. 5 minutes out and 5 minutes back. There is also therapy for my eyes. I have a popsicle stick with the letter “A” on it. I hold it out in front of me and pull it toward me until it blurs, then I restart for a few sets. Then I do the same thing sideways. It’s going to be a long time to build up strength—especially since I was so deconditioned before this surgery, plus the other two surgeries. My body is weak, and this next year feels daunting. I probably have two years of 4–5 therapy appointments per week in front of me once I work up to them all. That will include balance/neck therapy, POTS protocol, speech/cognitive therapy, occupational therapy (handwriting, grip), and strain-counterstrain therapy. They almost all come with homework too.

I asked the surgeon how much longer he expected my pain to last and how high it should be. My pain is still incredibly high. My mom keeps a schedule and wakes me up throughout the night to stay ahead of the pain. I still wake up multiple times a night in pain, and there’s usually a point in the day I can feel myself wanting to slip into a meltdown like a child because the pain gets so bad it feels like I can’t talk. The surgeon said he absolutely expects it to be that high right now. He said to expect the pain to come down and feel better by the 6-month mark.

At 12 weeks, in December, I’m going to have a CT to check the bone graft and make sure it is still in place. That will also be when I have another check-in with the surgeon virtually.

These last few weeks felt so turbulent and so exhausting. I have a long way to go, but I made it past the two-month mark. I’m so grateful for all the prayers and messages. I received messages of prayers and encouragement in the moments I needed them the most. I came home to a gift from a friend and a card from an unknown sender. I don’t know who sent the card or how you got my address, but thank you so much for the card and encouragement.

The last month has been about surviving, and I haven’t been up to responding much, but thanks for all the love and support. 💜

Shae

Whoever sent this card to me, thank you so much, for your thoughtfulness. I received it the day I got home and it warmed my heart.

Readmitted

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Sorry for the late explanation. I needed some time to calm down, restart and get and travel home.

Very long complex story, but I was readmitted because i had not had a bowl movement since before surgery. They released me before that happened saying it would at home. It never did. We called and they said if it was painful to go in, which is was so we did. We thought it would be something they took care of in the ER and we would be out that night. They came back in and said because of all the stitching neurosurgery wanted me readmitted for observation.

So, I was readmitted a scans showed a Seroma (fluid collection at the surgery site) that the ER was concerned about. The surgeon later told me that it’s very common and they would be surprised not to have one. That the ER always makes a big deal out of it.

During my 23 hour stay, I was not fed or given any fluids through an IV or a cup of water. Whenever I hit the call light button it was ignored. The doctor came in for around 3 mins and said all my problems were because I have an addiction to pain meds. (The one I just started taking after brain surgery on Monday). The only thing this doctor did was cancel ALL my meds for 10 hours. I went without pain meds other than Tylenol. There were a few medications the nurses even told me that had no idea what those were for and I had to explain how during brain surgery they stopped my CSF flow and I lost of CSF fluid so they filled me back up with saline and it takes time for the to become CSF, so that medication they stopped was to prevent the headaches that go with that. I asked for my meds several times and was always told to just wait for them to ask the doctor. They also asked the doctor if I could have a small bowl of oatmeal and an IV for hydration. They finally came back and said they could see the doctor was reading their messages, but not responding. They said we could fire her and get a new doctor, so I formally said that’s what I wanted to do. Another couple hours and they come back to say, I can’t fire her because she is the only doctor working that floor right now. They also let it slip that the doctor had also gone to empathy training before.

It gets to be a whole mess of meds being ordered and then canceled “this” is gonna happen but nothing does. I am in so much physical pain, starving, dehydrated and I don’t feel safe. I could write a whole post on medical gaslighting. It’s real and dangerous. I felt scared and so I stood out of my hospital bed and started taking off all the monitors and got dressed. I told my mom I wasn’t safe and was leaving. That I would follow up with my primary care back home who I love. There was no clear reason why I was in the hospital. I had already met my goal and was declining from no food or water. The nurses kept wanting me to stay for the next shift because there would be a new doctor and I could be reevaluated. They convinced me to have a meal and to just wait for a few hours or a new doctor. I did. Only to find out right before it would be the same doctor. I think they wanted me to stay because once you hit midnight again the hospital can charge for another full day even if I’m only there for a few minutes after midnight.

The doctor finally started sending in meds, but smaller doses than I take (according to the plan created by my neurosurgery team). I told my mom I was done with this pettiness and just wanted to go home where I know my parents can take care of me. I was physically not in that much pain and suffering at home.

One of the nurses I love checked me out before midnight and we got the number to call about that doctor. When we go back in two months for the follow up appointment I might want to follow up with what happened in person cause that was wrong. It took days to get my pain manageable again. I also have other conditions like POTS and fibromyalgia that were caused to flare because of the lack of care I was receiving. I have to be on it with my health. With the foods I eat, hydration and medication. Not even mentioning brain surgery. I was denied all of that under this doctor’s “care”.

I’m sorry it’s taken a couple days to update about this. I’ve had nightmares about it and it’s still real upsetting me to think or talk about it.

Shae 💜

Hanging on by a Thread

weatheringchiariLeave a comment

I can feel my strength getting weaker. My heart getting heavier. Every day is getting harder. I’m having to use a cane now to help with my balance and lightheadedness. There is so much breaking my heart from my illness and physical pain and the impact this illness has had on relationships. 

Life’s just hard. I’m trying to take it day by day, but that sometimes turns to hour by hour. The ground is feeling more unsteady with every step forward. 

Sometimes I feel so shaken and fragile as each day brings me closer to the brain surgery. I’m feeling so weary and tired. I wish all of this was already behind me. 

(Here’s an inside look into how my prayer goes sometimes)

I was praying earlier about my struggle and questioned why this was happening to me again. Why does it feel worse than before? I asked God to give me the strength I don’t have and to carry me now because I’m too tired. I told God I felt like I was only hanging on by a thread. That there’s no way out for me. 

I thought about that phrase “hanging by a thread” for a second and began to imagine a thread and the image in my head took on the old hem of a tattered robe.

The woman in the Bible who bled for 12 years and touched the robe of Jesus was my first thought. 

Honestly, that story has become a hard one for me to hear and read. There has been some unintentional misuse of that story towards me. I had someone I know compare me to the woman. They told me that if I just had more faith and decided to reach out and touch Jesus’ robe, I would be healed. 

These last few years, I have had many people tell me things like that. If I just had more faith, prayed more, or confessed my sin I would be healed. Someone even asked me what my parent’s unconfessed sin was. 

I slowly began to realize I felt like the woman who was isolated from her community and church. She was known for her illness. It’s been really hard and I struggle sometimes to be in church or with a group of believers. I feel insecure and tainted somehow. I feel like everyone knows my prayers haven’t been answered and I’m marked. I know this is irrational thinking, but the insecurity, feeling different from my peers, and not having a “normal” young adult life 

It is easy for me in the moment when these things are being said to brush it off, but with my insomnia and the fatigue at night, the lies begin to distort the truth. 

I lie awake and wonder why has God not answered my prayers. Did I do something wrong? Am I not enough as I am?

I read a book by Costi Hinn called, More Than a Healer. I loved how he described that way of thinking. This is my summary, but he describes that way of thinking as making God’s love transactional. That we have to do or say the right things for Him to bless and take care of us. 

The one thing above all I have learned from this experience is my faith is not built on anything other than the tender mercies and love of Jesus. We are not promised a life free of worries and pain, but we are promised the unconditional, never-ending love of God that surpasses all understanding. 

I find myself avoiding the story of the woman who touched the robe of Jesus because it would make me feel angry and confused about why healing hasn’t come for me. I don’t know and I may never know. Full healing may never come for me on this side of heaven, but I know it will come. I have a promise of a future with a new body and no more pain. A place with no more tears and heartbreak. 

When I was praying about having on by a thread and then thought of the woman and the robe, this time I thought of Jesus’ robe tattered and worn with threads hanging off the bottom.  He was described as a man of sorrow. He carried the sorrows of the world. My sorrows. 

I realized that yes, I am hanging on by a thread. The thread of the robe. The robe of the one who will lead me to life everlasting. 

The Book of Job is one of my favorite books of the Bible. One of my favorite passages of scripture is after all of Job’s questioning and debating, God answers him through a whirlwind. He asks Job a series of questions showing the full awesome power of God and the smallness of man. In God’s love, he restores Job’s life. Job ends by saying, 

“I have heard of You before, but now I have seen You with my own eyes.” 

Thank you for all your prayers and support,

God Bless, Shae

TOMOROW IS THE DAY!!

weatheringchiariLeave a comment

The other GoFundMe had some problems, so my friends Amy Munoz and Heather Hartrim-Lowe have organized a new one. Tomorrow is the day i am having my second brain surgery! We barely made it out here to Denver, because of the weather, but we are here!

We appreciate all of your support, it’s taking a lot to be here and the expense of the surgery itself. They need me to stay out here for two weeks to make sure there are no complications. Then I will have a 10 day follow up appointment with them where they will remove my staples and do an evaluation to clear me for the flight home. I also need to come back to CO in two months for a follow up appointment.

I’m using a cane now because I have developed some mobility and balance issues. I’m losing the fine motor skills in my hands too and barely able to write with a pen. My ability to do math and keep track of time is gone right now, adding 2+5 is beyond me and time is confusing. There is short term memory loss also. The headaches are nonstop because of the fluid blockage in my brain. Hopefully, this surgery will heal and restore those things or at least stop the progression and will greatly improve my quality of life.

We would like to cover January 15, 2024 in prayer for Shae as she goes in for her 2nd brain surgery. Please join us in praying for Shae: every part of her procedure and recovery, the doctors and nurses, hospital staff, hospital, operating room, recovery room, and Shae’s family. Let us pray that in all things God’s will be done.

Shae had brain decompression surgery in March 2021 for a rare condition called Chiari Malformation (kee-AH-ree mal-for-MAY-shun) Type I. Since then, Shae has experienced complications, including a leak and scar tissue that is growing like a weed at the site of the previous surgery.

Last year Shae had over 135 medical appointments which does not include the ER and urgent care visits. There have also been dozens of trips to the pharmacy and calls to doctors and insurance, not to mention all of the scheduling. It’s overwhelming!

Shae is going to a specialist in Colorado who is familiar with this rare complication. Shae hasn’t been able to work or return to school and needs support for travel to Denver and upcoming medical bills.

Shae’s 2nd surgery is scheduled for January 15th, 2024. The goal of this surgery is to remove the scar tissue and replace the initial duraplasty (the outer covering of the brain). The hope is to stop the cerebral spinal fluid leak. In addition, exploratory surgery will look for additional complications. After surgery Shae will need to stay in Colorado for ten days. At her ten-day follow-up exam, the doctors will assess her recovery and remove the staples before releasing her for travel home. Shae will also need to go back to Colorado for a follow up in two months.

Please consider helping Shae and her family financially as they navigate this extraordinary medical journey.

https://www.gofundme.com/f/support-shaes-brain-surgery-and-recovery