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.
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.
Driving to CA for the specialized scans before surgery, next week.
During my post-op I had some bloodwork done. I received the results the following day, which shows that my liver is damaged.
I called my doctor, but he was out of the office and I spoke with an on call doctor who doesn’t know me.
Before the second surgery I hardly took any medication, now I take quite a bit. I don’t drink any alcohol because of how it will interact with my medications. One is a beta blocker for my heart rate. This doctor told me to stop drinking and I would be fine. The more I tried to explain I don’t drink, the more unconvinced he was. I felt like I was a cliché character who is committed in an asylum and tells everyone, “I’m not crazy!”
I decided to just wait till my doctor got back to the office. When he did he said he thinks it could be the medication I take for seizures. I’m already weaning off of that for surgery. I also take a headache medication that could be contributing. But, when we talked to the pharmacist, she said I’m on such a low dose of both that she doesn’t think it’s the medication causing it at all.
My doctor says it’s not enough to disqualify me from surgery, but once I’m through the woods with surgery I’m going to need to follow up on it and we are going to keep a close eye. It could just be my body under intense pressure and stress.
Please pray for healing for my liver as we don’t know what’s going on with that.💜
Update: I had my pre-op yesterday. They did an EKG, chest xray, bloodwork, MRSA swap, etc. Now, that’s off my list!
Since the neurosurgeon thinks undiagnosed EDS is why my surgeries keep failing, I’m going for a special upright MRI, before the surgery on the 25th. They’re trying to decided if my neck is unstable and I need to have it fused. My mom called around found the closest place is in Renton, WA but they’re a 5 week wait. Renton referred us to a clinic in San Jose, CA that can get me in next week.
We are now driving down to CA to get this MRI, so the surgeon can see it before surgery. Luckily, more likely God arranged, we have family friends that live in the area that we can stay with.
We are going to drive down Sunday, get the scans on Monday, and return Tuesday. Then we leave that Friday for CO.
It’s going to be a lot for my body.
This is all falling into place this morning and there’s still a lot of moving pieces and we are having to roll with the waves. Please pray for us as we are trying to accomplish everything that needs to be done before the surgery date. My mom has been spending everyday on the phone going over details and the list of calls keeps growing.
Please pray for clear communication between all the doctor’s offices, insurance, case managers, etc. It is overwhelming how many things need to be done and arranged for this to all workout.
Pray for safe travels as we go to CA and back and then on to CO.
Pray for all the moving pieces and everything that is still up in the air. All the things that need to come together.
Thank you for all your prayers and support. My friend made a GoFundMe to help with this very unexpected and fast approaching brain surgery.
It’s hard for me to write this because I’m having to accept and acknowledge that a third brain surgery is rushing at me like a freight train. I wanted to wait until I had more answers.
I have been struggling with migraine/head pain, nausea, blurry vision, worsening balance, etc for over two months now. The pain dramatically drops when I lay down flat, but doesn’t go completely away.
I’ve been to the ER 4 times now for pain relief. A CT showed a pseudomeningocele (collection of fluid) on the surgical site. My primary care doctor ordered a series of MRIs with and without contrast for follow up along with a CINE motion study (CSF flow- the fluid moving around my brain and spinal column).
The MRIs show that there is a fluid collection on my surgical site. I reached out to my neurosurgeon in CO and mailed him my MRI scans. He called me this week and wants to see me in person. I got an appointment with him in the first week of August. I’m also on the cancellation list so I could get in sooner.
There’s a leak somewhere in my dura (lining around the brain that was patched) that is causing this collection of fluid and it probably needs a surgical repair meaning a third brain surgery.
I met with my primary care yesterday to come up with a pain management plan until I meet with the surgeon. He put a referral in for the infusion clinic again (getting hydration and migraine medication). I’ve stopped all of my physical therapy for now until I’m cleared to go back.
This waiting period is so hard. I just want to know what is happening and I’m having to wait for answers and waiting for the outcome.
Thank you for your continued prayers on this very long journey. 💜
Shae
“God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.”
Hello friends! I have a HUGE development and potentially a chance at a major reduction of symptoms and a huge improvement in my quality of life.
I’m sorry for the delayed update. For a while everything was just the same. There wasn’t anything new to report. I was in and out of the hospital a bit and on and off bed rest. I didn’t want to share all of the negatives. But, no big developments…until recently. Now I am totally off bed rest and working on clear goals.
This is going to be a story.
Bear with me, because of my storytelling skills and it gets a little dense…
Back in the summer of 2020, before my diagnosis of Chiari Malformation and then brain surgery, the first thing my primary care suspected was a condition called POTS.
From the Cleveland Clinic:
“Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart to beat faster than normal when you transition from sitting or lying down to standing up. It’s a type of orthostatic intolerance.
Each word of “postural orthostatic tachycardia syndrome” has a meaning:
Postural: Related to the position of your body. Orthostatic: Related to standing upright. Tachycardia: A heart rate over 100 beats per minute. Syndrome: A group of symptoms that happen together.”
“When we stand, gravity pulls more blood into the lower half of the body. In a healthy person, to ensure that a sufficient amount of blood reaches the brain, the body activates several nervous system responses. One such response is releasing hormones that help tighten blood vessels and cause a modest increase in heart rate. This leads to better blood flow to the heart and brain. Once the brain is receiving enough blood and oxygen, these nervous system responses settle back to normal.
In people with POTS, for unclear reasons that may differ from person to person, the blood vessels don’t respond efficiently to the signal to tighten. As a result, the longer you are upright, the more blood pools in the lower half of your body. This leads to not enough blood returning to the brain, which can be felt as lightheadedness (faintness), brain fog and fatigue. As the nervous system continues to release epinephrine and norepinephrine to tighten the blood vessels, the heart rate increases further. This may cause shakiness, forceful or skipped heartbeats, and chest pain.”
I had many symptoms at the time, but it only addressed about 40-50% of my full symptom list. That was enough for my doctor to want me to be aware of it. Then I went off to school, got diagnosed with Chiari, moved back home and had surgery. So in my mind POTS was off the table and not something I thought about very often because many of the symptoms overlap with Chiari. I have so many commodities, it’s impossible to pinpoint each symptom to the cause.
Since the second brain surgery in January 2024, I’ve been hit hard with lots of escalating symptoms. For example, when I stand my vision goes completely black and I feel very faint and will have to sit down or lie on the floor. It’ll happen even if I’m lying down and just shift to a sitting position. I’ve not been able to eat much, been very sound and light sensitive, my skin and eyes have been really dry, my bp is low, I am short of breath when I am not doing anything, and lots of brain fog and fatigue.
A few weeks ago I met with a pain doctor (my request, I was so desperate for relief and thought they could help with medical massages or things like that) and it went as bad as it possibly could. He told me it was a psychological problem and that I probably didn’t need the first surgery to begin with. He focused on the notes from the initial neurosurgeon in Seattle who wouldn’t do the surgery and told me not to get a second opinion. He didn’t seem to be very familiar with Chiari, so he talked about anything but Chiari.
When this pain doctor first walked into the room, he made some “jokes” that just didn’t sit right with me. About how thick my file was for someone so young and how confusing it was…hahaha. He said he was confused, so I must be too. Then he said that my problem is because of the syrinx (a fluid collection, like a cyst) in my spine and the patch in the lining around my brain is probably leaking and that I probably need a blood patch. If that’s the cause my symptoms would be different and I would probably need another brain surgery. Now, for those with Chiari and who have had brain/neck surgery you don’t want to mess with your spine like that without good reason and clear evidence. I’ve become very cautious with doctors who just want to poke and prod and throw a diagnosis at the wall to see if it sticks or to save time.
He also did an assessment and said I meet the criteria for EDS (Elhers Danlos Syndrome), but that no insurance would pay for a diagnosis. I’m not sure what “pay for a diagnosis” even means. EDS is something that comes up a lot. There is definitely is a crossover with Chiari Malformation and some of my other comorbidities, but I don’t meet all the criteria. The evaluation the doctor was using was an outdated and incorrect method of testing. I am very hypermobile and fit those boxes, but you can be hypermobile without having EDS. He also saw my referral for genetic testing and told me that there was no way I would qualify for that and that if I wanted to buy a diagnosis then it would need to be out of pocket. I felt completely misunderstood. I am trying to get diagnoses removed and looking for clarity, not to add anything.
I am not going back to him.
That same week I met with a geneticist who he took my history, reviewed my symptoms and decided I qualified for genetic testing. He also initiated an EDS assessment, but didn’t think I met the criteria for EDS. He said there are other types of hyper mobility conditions.
There are four ways the genetics test can go:
Nothing comes back.
One or more gene mutations.
A gene is flagged as a mutation, but there’s not any information on it and it’s unclear if it’s symptom causing.
Nothing comes back now, but as science keeps progressing and evolving something could be flagged in the future. It’s more for information gathering at this point for the future.
There are still so many unknown genes and information surrounding genetic testing.
Later that week I was sharing with a friend, who has POTS, what happened. She told me about Western States University and their POTS clinic, she shared they had really helped her get her POTS symptoms under control. She suggested we call right then and see about getting an evaluation appointment. This was on a Friday and I got in on the following Tuesday. I was stunned at how quick I was able to schedule an appointment.
We were there for five hours for the assessment. It began with a very thorough medical history, a neurocognitive assessment, a neurological assessment, an EDS assessment, and then a NASA Lean Test. One of the issues I’ve been having is getting a formal POTS diagnosis, because there is no one my primary doctor knew of in our area doing a tilt table test, which is what it sounds like and is the common diagnostic tool. There is a doctor at OHSU, but her waitlist is seven years long. The NASA test is a version of the tilt table test that NASA developed because for some reason all astronauts have come back from space with POTS. The NASA test is over 50 years old.
For the NASA test I wore a heart monitor and laid in a dark room with no talking or noise for 15 mins so that we could get a baseline of my heart rate, 66 beats per minute (bpm). Then I leaned against the wall with just my shoulders touching and my feet about a foot from the wall. Over the next eight minutes, while I stood there quietly and without moving, my heart rate jumped up an additional 76 bpm to 142 bpm and continued climbing. I couldn’t feel my heart rate climb, I just felt a little nausea and some mild dizziness.
I was not feeling very “symptomatic” that day, it was actually my best day in weeks and I was worried the testing would not capture whatever was happening to me. That was not the case. 😂 They cut the test two minutes early and instructed me to lay on the table so my heart rate could come down to normal. Then I was led to a room to talk with Dr. Bill Moreau.
Dr. Moreau did something that no other doctor has done before. He told me he was going to tell my story back to me from what he understood and he wanted me to correct him where he was wrong. He began from when I first started getting symptoms at 15 and went all the way up to now. He had the full picture and understanding that no other doctor I have met with has been able to grasp and understand. I was floored by his insights into the different phenomena I’ve experienced with my body. He explained things to me that I had even stopped bringing up to doctors because they just kind of stare at me and move on.
The reason why he understands so much is because he is a researcher and Sports Medicine doctor who runs a Concussion Clinic. He was part of the NFL International Think Tank on Concussion Research that changed the way concussions are treated. He was also the Vice President of Sports Medicine at the United States Olympic Committee for ten years.
Brain surgery (surprisingly…) counts as a brain injury (mild traumatic brain injury)(mTBI) )along with the actual compression of my brain for who knows how long. It honestly seems like such a simple solution and kind of obvious to be treated as having a brain injury, but for some reason that hasn’t been the case. I have no idea why no one has approached my case through a brain injury lens, but it makes sense and it has opened a whole new world of recovery to me. It is a huge answer to prayer.
Dr. Moreau diagnosed me with Dysautonomia, POTS is a branch of that. Some people develop Dysautonomia after a brain injury. 1 in 5000 people have it. He explained that research on it is moving from the fringe of science towards the middle because so many people have developed it as a result of Long Covid. He told me it is not in my head and that the symptoms they are measuring are things like my heart rate that I have no control over. He said it is impossible for me to make my heart rate jump like that. I know that, but it felt really good to hear it from a doctor. He shared that he isn’t going to be going off of my feelings, he is going to be working with measurable criteria. He used a computer analogy. He said that my processor and memory are working, but the CPU is broken. They will help my brain rebuild the pathways between the two.
Dysautonomia is the missing piece that contains a reason for all of the random symptoms I have been experiencing that my doctors have been struggling to understand. This chart captures most of it, it is just missing sleep.
“Dysautonomia is a nervous system disorder that disrupts autonomic body processes. These are automatic functions like your blood pressure and heart rate. Having dysautonomia means these functions don’t work properly, causing disruptive symptoms. These symptoms are often manageable, but diagnosing and treating dysautonomia is sometimes difficult.”
He also asked me to be part of a POTS study to show the need for active interventions (PT) so your brain can heal. I agreed. The idea is to create new neural pathways and to teach my brain how to not freak out when I move.
So, I’ve started this protocol where I go twice a week. My calves are wrapped with 6″ ace bandages for compression and I wear a heart monitor. I work one on one with a resident who leads me through a series of exercises for 60-90 minutes. The first two weeks are supposed to be the hardest as your body adjusts and your brain is pushed.
The other big thing the doctor recommended is getting prism glasses. He could tell by looking at my eyes that they weren’t aligning correctly. He explained that if we were sitting side by side with our eyes closed we are both running at 100 horse power. When we open our eyes, I lose 40 horse power as my brain tries to compensate for the misalignment.
He referred me to Dr. Elizabeth Powers, a neuro ophthalmologist who specializes in helping people with brain injuries. I met with her and she again did a detailed history and a lot of testing. She explained that the Dysautonomia is causing my body to be stuck in fight or flight, so we have to work on calming my body down. I started wearing the prism glasses a few days ago. They are tinted a mango orange and I wear them over my contacts. Glasses with an orange tint block out blue light, which helps our bodies’ circadian rhythms get back on track easier and should help improve my sleep. I am still getting used to them because they are physically retraining my brain to see in a different way. I should notice a difference in 3-4 weeks.
Dr. Powers also recommended blue light therapy for my eyes. She said that it will help to reset the biochemistry of my brain. It helps to reduce daytime drowsiness, brain fog and should help me sleep better. I am scheduled to start that next month.
I’m also still working with an Occupational Therapist, who is helping me with things like time management. We made a binder where I can visually see the days and my activities with places for notes. We’re putting together a tool box too with things like grips for helping me hold my pens and various ear plugs to help with sound sensitivity.
I’m still doing physical therapy for balance and mobility with the physical therapist who I’ve been working with for almost three years now. She is amazing and has been a key part of my team on this journey. There is also speech therapy and strain counter-strain therapy to help with overall pain relief.
There are still many symptoms I’m struggling with and some days are better than others, but I’m learning to manage it. I’ve made a bag I carry with me filled with ice packs, ear plugs, electrolytes, vomit bags, ginger drops, and anything else that might help me when I’m out and about, going to appointments and trying to live my life.
The hope is this clinic will be able to help me. I should know in two to three months if my body is responding or not. If I am a “responder,” then I will continue with the Moreau Protocol for the next 1-2 years. There are no guarantees, but hope that I will eventually be able to drive again and go back to school.
Prayer points:
Endurance I’m feeling exhausted. This protocol is a lot of work and I’m tired. I’m in my second week now and some days my symptoms and head pressure are bad and I lay down with an ice cap on my head. I also go to the other therapies, so next week there are five appointments.
Response Please pray that my body responds to this therapy and that I can enter into the long term treatment phase.
Hope It’s still a lot to process and I feel excited, but also a little bit of some “tempered hope” as it was said to me. I’m trying really hard to keep going and to be hopeful but at the same time there’s a part of me that doesn’t want to hope too much. I don’t want to get my hopes up too high like I did for my first surgery. It’s mentally exhausting.
Trust Going back to looking at the way I ended up at the clinic and how fast I got in with them and then quickly in with the neuro optometrist and I’ve already received the glasses two weeks earlier than expected, it’s clear God has a hand in this.
My mom took me to see one of my favorite bands, Cain and they sang a new song called, “Wings.” I thought it was funny because when you look up POTS and Dysautonomia memes there’s sayings about being “allergic to gravity.” “Wings” is a new song about feeling heavy and having troubled times always trying to bring you down. Then about how we’re gonna fly with wings like eagles because “gravity” has no grip and then to soar to new horizons.
Thank you all so much for your continued prayers and support. This is a long journey and I am glad I am not doing it alone.
God bless,
Shae
This is my song for this next season.
"Wings" by Cain
“Heavy days, heavy heart, got that heavy burden Weighing on my shoulders now Troubled times, troubled mind, got that troubled feeling Always tries to bring me down
The world can wait 'cause I'm gonna wait on You I feel my spirit lifting when I do
I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Gravity ain't got no grip on me 'Cause I've got wings Oh, you know I've got wings, yeah Oh woah
I might be down here, feet stuck on the ground here But You keep my head above the clouds All of the problems, way too big to solve 'em Are so much smaller looking down 'Cause only You can change my point of view I feel my spirit lifting when You do Oh-oh I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Gravity ain't got no grip on me 'Cause I've got wings
Yeah, I've got wings Oh woah Mmm
Here we go
I feel the roof coming off of this place Coming off of this place I feel your spirit renewing my strength Yes, Lord I can hear heaven is calling my name Yeah, yeah
And I feel the roof coming off of this place, yeah And I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Hey Gravity ain't got no grip on me Oh yeah, oh yeah 'Cause I've got wings
These last few weeks of my life have been so hard. I’m bed bound most of the time and even with the pain meds I’m still feeling a lot of pain. I’m mostly lying in bed. Isla moved out of her room so I could be on the first floor and not have to confront the stairs. I keep falling and I’m relying on my cane.
My mom got me some sketch supplies and watercolors cause I was going crazy just laying in bed. I got a lap desk off of amazon that’s adjustable, so I don’t have to look down.
I am not supposed to move my head and neck much. I can do small “princess nods”, but I can’t see the floor when I walk or twist my neck and body. Using the cane has been so helpful with my balance and fatigue.
I’ve been out of the house a few times for medical appointments and once for a dinner. I go on car rides to the store or pharmacy and wait in the car, just to get out of the house. It takes a lot out of me.
My fatigue is high and my energy is very low. I have a hard time standing for too long. Sometime, my head gets heavy and I need to lay it down or my vision goes black and I feel like I’m about to faint. I’m supposed to take it easy, but still walk a little. As soon as I start moving, the pain and symptoms definitely get worse.
My insomnia is worse than ever. It takes forever to find a comfortable position to sleep with pressure on my neck and head. I’m constantly waking up to adjust the pillows and blankets, get ice packs and take my pain meds. I’ve also been having a lot of nightmares that are making it harder.
Isla comes and sits with me, but she always makes me laugh so hard I’m scared I’m gonna tear some stitches.
We’re home now and made it through surgery, but in a lot of ways we are still in the thick of it.
I’ve had several doctor’s appointments and there’s been a ton of pharmacy runs.
The insurance is pushing back a lot on some of my medications.
Over the weekend, there was a mess up with the prescriptions and we thought we had more refills than we did. The bottle had multiple refills written on it but the pharmacy, said there system can’t process that.
I had to call my doctor and because it was the weekend they said that it would be better for me to just go to the ER than go through the on call doctor. Which we did. They gave me just enough to get to Monday to talk with my doctor.
My doctor did everything he could on his end, and it got sent to insurance who is denying it.
We are all stuck in this cycle of it goes to my doctor, to the pharmacy, then to insurance and the back again. Please pray that this all gets sorted out.
Just a few more weeks and I’ll be through the worst of it and on to the next chapter of healing and working with a physical therapist. I also be able to wash my hair with something other than baby shampoo.
Thanks for all the messages and checking in with me. Sometimes it takes me awhile to respond, but it really does encourage me. 💜
I’m home now since Thursday night. Thank you all for the constant prayers and the steady support and love.
I’m exhausted and have been sleeping most of the days away. My body physically feels worn. It’s hard to move, but I’m making myself go up a flight of stairs and just want to walk around. Some days are easier than others. If I lay still with an ice pack and some meds I can manage. It’s the moving around part that’s hard.
Isla has been so gracious and is letting me sleep in her room in the lowest level of the house, my room is on the highest floor. Which freaked out everyone (including the medical team).
A few family and friends have briefly stopped by, but I am mostly sleeping. I don’t actually remember all the details of my first surgery, but I really don’t remember sleeping like this.
I have to wash my hair and incision every day with this baby wash type thing. One of the nurses told me to be prepared that I am going to lose some hair in the coming months from the medication and my body being under stress. That happened last time, so I’m ready for that. I already cut my hair shorter so it’s easier to manage and grow out.
I saw my primary care doctor yesterday. My incision is a little swollen, but we’ll just watch it for now.
I made a playlist of everyone’s suggestions and I play it all through the night. It’s very eclectic and lots of it is new to me and gives me lots to think about.
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.
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.”
Weathering Chiari 