Today is two years since I had brain decompression surgery!!

It’s been a long and rough journey and still feels surreal. It’s really hard sometimes because I am so far from where I thought I would be at this point. Originally, we thought I would be back to school and work four months after surgery. This is not the life I ever imagined for myself. Sometimes, I feel so far behind where I am supposed to be in life and left behind by the world. 

I am continually dealing with many symptoms that are puzzling to the doctors.  So far, It has been impossible to know if it’s from Chiari Malformation itself, structural changes from surgery, or another underlying condition. Chiari Malformation is still being researched and is not fully understood.

I am still doing the weekly infusions, they seem to be helping to keep the pain and nausea down. My neurologist gave me a rescue medication for migraines. I’m supposed to take it as soon as I start to feel symptoms coming on, which can be a little tricky to notice. The rescue medication with the monthly Emgality injection I give myself have been helping. 

My doctor added on balance therapy on top of neck, hip and overall endurance PT. My physical therapist is wonderful and I have made so much progress. 

The balance therapy consists of simple things like holding a popsicle stick with a letter on the tip and moving it back and forth in front of my face until it’s clear. Tracing lines of an “H” with my eyes written on a piece of paper hung on the wall. 

I also toss a ball in the air and have to work on keeping my eyes focused on the ball and working on catching it and switching hands. It’s working to get both sides of my body coordinated together. 

It has really been encouraging to see all the progress I am making. 

There are still some symptoms that are puzzling. I was recently diagnosed with Geographic Tongue. It’s is a benign condition that they don’t really know a lot about other than it’s benign and there is not a treatment for it.  There is a known link to Lupus, though it’s not totally understood. 

After my ENT appointment, I told my mom there had been so many “benign” diagnosis for all these random symptoms that I wonder when the dots will start connecting. 

My doctor ordered an autoimmune panel to look for an autoimmune disease (Lupus). The test for ANA, which are the nuclear antibodies that are present with an autoimmune disease, was positive.

 I saw my neurologist after the results and he says I should probably meet with Rheumatologist, which is a 9-12 month wait for an appointment. It’s still unfolding and I don’t know much yet. I’m still waiting and praying. 

I still am having a hard time with some cognitive stuff so movies are hard to follow and sometimes reading is difficult. I’m still struggling with some short term memory and comprehending things, it just takes a little longer. The thing that has always been easy for me to follow and is always in the background is music. It’s very soothing and it doesn’t cause mental fatigue like a movie. 

Many things are still up in the air and looming, but I’m still living life the best I can. I’ve been working with YoungLives and helped planned a worship night. I am going to Winter Jam this weekend with my family. My mom won two tickets to see Zach Williams and Blessing Offor next week.  I am so excited to sing the songs live that have been reminding me of hope these last few years. 

One of my favorite songs has been Believe by Blessing Offor. It beautifully describes the process of faith and wrestling with questions that come and lack of answers and the answers we don’t want. 

So you catch me when I fall, right?
And you hear me when I call cryin’?
And you fix me when I’m broke, right?
And that’s all I need to know
So the storm is gonna break right?
And the sun is gonna start shining
And everything is gonna go right
And that’s all I need to know

But what if you know something I don’t?
What if you will something I won’t?
If you don’t give me what I want
But you give me what I need
Is that enough to

Believe, believe, believe, believe in your love?

My other song I’m in love with is Cornerstone, by TobyMac. When I look back at this whole journey I can clearly see that Jesus has been my cornerstone. The foundation that I built my life on and it has not failed me. He is the one thing that has stayed solid and unchanged in my whole life. I still have questions that I may never get answers to on this side of heaven, but I know His love for me is solid and the foundation of my life.  

Lookin’ out my window, feelin’ the crescendo
Sunset on a quiet sea
Sitting with the ones that I’ll forever love
We’re waitin’ on a flash of green

And even when the nights got cold (got cold)
You have always held me close (me close)
You’re the only rock that I could ever stand on
You’re the only one for me

The sun goes up, the sun comes down
This old world keeps spinnin’ ’round
I’m here travelin’ down this long and winding road
Seasons come and seasons go
They take me high, then leave me low
But I’m still standing on the only rock I know
You’re my cornerstone
Oh, oh, oh, no matter where I go, my cornerstone

I got the results from my cognitive testing I did last week. My neurologist had sent me for a neurocognitive/psychological assessment. I had talked with him about having a hard time focusing, getting lost in conversations and memory issues.

The testing was all day and the tests are designed to stress and push your brain. Aside from the testing though, I also had to go over my whole medical history with the neuro therapist, which was just as exhausting as the testing. They also dug into my psyche because there is always that shadow of the first neurologist I saw, SEVEN YEARS AGO, who said all my symptoms are caused by anxiety. That has been a source of confusion for many doctors I have seen since then.

The results from the test show that there are some areas cognitively that I am struggling with. In the picture you can see the solid black line is where the average is for my age group. The neurocognitive therapist said I scored “exceptionally high” in verbal processing, decision making, problem solving, and abstract thinking.

That is my strength and the part of me that people see. I present really well in that area, so talking with me you wouldn’t see the other areas in my cognitive ability that has been impacted and that is a struggle for me. The neurocognitive therapist said that can lead people, doctors and specialists to not understand the greater struggle.

I scored lower in visual processing and working memory. So, it’s not my memory that’s impacted, but my working memory. That means it is harder for something to become a memory, but if it forms and becomes a memory then I can remember it. It can just get jumbled and frayed in the process.

The test also can put to rest that my symptoms are somehow caused by anxiety. I definitely feel anxiety related to this medical journey and all of its layers, but that is born of my physical symptoms and the impact they have had on my daily life. That is a huge relief. Now I can feel free to say to doctors that anxiety can sometimes make my symptoms worse (like insomnia), but please help me figure out what is going on in my body.

How do you not go through brain surgery without experiencing increased stress?

The neuro therapist wants the writing sample I shared with my neurologist and he wants to see my huge symptom tracker. He said he is going to look for a pattern and then send the results of the test and a write up of his assessment to my neurologist.

The next steps will be the neurologist trying to determine what’s caused from Chiari Malformation or if any of it was caused from surgery.

I also had an EEG done yesterday. I thought that it would be passive and I’d just lay there. I did just lay there, but I also had to lay under a strobe light for part of it…no what I was expecting. Those results will be sent to my neurologist in about a week.

I have entered another round of information gathering.

Although the results did show that there are some areas where I am struggling cognitively, I am glad to have a better understanding of what areas have been impacted. It’s also reassuring to know that after so many years of being medically gaslighted, I can trust myself in what I feel. I had the words of every neurologist and doctor who told me it was all in my head, spinning in my mind while I was waiting for these results.

This week has been full of answered prayers. 💜

God bless,

Shae

The long awaited appointment with the neurologist was earlier this week and it was a complete disappointment.

The neurologist was not at all familiar with Chiari Malformation and was not comfortable treating it. She focused the first half of the appointment on all the previous misdiagnosis before I was diagnosed with Chiari Malformation, starting when I was 15 years old. She went into how she knew a few of the neurologists who I saw or knew of them. Which made it awkward, because their diagnosis were wrong and she seemed to miss that part.

My doctor and physical therapist recommended to me that I write out a list out of all my symptoms and to try and notice if there are correlations between them and to make notes. When I pulled my list out she waved her hand and told me she did not need to see it.

She kept interrupting me and did not let me ask any questions. She redirected everything I said back to migraines and the medication she thought I should take.

We didn’t discuss Chiari or brain surgery. Anytime our conversation drifted over there she just redirected it and would not let it happen.

When I got to the car and read the after visit summary it did not reflect the appointment at all. She had written that she discussed all these things with me that she did not, and the stuff we did talk about was not reflected in the notes. There were also inaccuracies about symptoms which will add to the confusion with the next doctor.

I felt myself shut down during the appointment because it was just like every other appointment with someone who does not understand my diagnosis. It was so frustrating and discouraging. I want to understand what is happening in my body and what is causing some of my symptoms.

We called my doctor’s office the day after my appointment and talked with a lead medical assistant and shared our frustrations about the appointment. She looked up on her computer “Chiari Specialist” in Oregon and Washington but it only brought up neurosurgeons, which is not what I need because I already had surgery.

So, I am back to being stuck in between not needing to see a neurosurgeon, but not being able to find a neurologist.

We are regrouping now. I am not sure what to do now. I just want to understand what is happening in my body. We are thinking that we may reach out to different groups like Conquer Chiari and Chiari Project or reach out to groups on Facebook to see if they have any recommendations.

In the meantime, I am still getting weekly infusions and I am going to try a monthly injection that is supposed to block the pain receptors in the brain stem. My brain stem was compressed by my skull, so this injection (Emgality) could help with that.

I hope this helps because I have more days with a migraine than I do without during a month and head pain daily.

I did the first injection today. It takes 10 seconds to do, but with my nerves it took me about 40 minutes. It felt like a wasp sting and burned. Since it was the first initial dose, I had to do two doses. The second time I was able to work through my nerves a little faster, but it did not help that I knew what was coming. I will try it for three months before it is consider a failed medication and I try something else.

Still waiting and still praying,

Shae

“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

Hello friends,

I know it has been a while since I have posted an update. It is still a challenge to keep up with messages and reaching out, being social, but I do read everything, and I appreciate and love all of you. It can still feel overwhelming, and I tend to need long breaks from my phone because of the headaches and nausea.

I went as a leader to the YoungLives camp recently. It was an amazing week! I did a whole lot better than I thought I would. I did have a weird “neurological episode” the last two days I was there, but I was able to get an IV infusion there with my usual meds and that helped. I came home and slept for a solid two days, but then was able to slowly start getting back to my normal routine. Which is huge progress!

The appointment with my doctor a few weeks back went well. I have been waiting for an appointment with a neurologist and have not gotten anywhere, so my doctor had the idea to refer me to a pediatric neurologist (because I am under 25) he has worked with who he thought might be a good fit. He thought that if she was not able to see me because I am out of her age range at 23, she would know who to refer me to instead.

So, it gets a little complicated but here is what happened. The neurologist I had at Legacy retired last year so I was referred to another one who also ended up leaving but he referred me to a different neurologist who I have been waiting to hear from. I got a letter in the mail this week from the second neurologist, who I already knew was leaving, telling me that he was leaving and that I need to find a new neurologist. I was confused about why I was receiving that letter if that is not who my referral went to in the first place.

My doctor called me this morning to tell me that the pediatric neurologist only sees patients under eighteen, but that the referral to the neurologist (the one I thought I was waiting on) was approved, but it was odd because it says in their system that they are waiting on me to call them.

We have been waiting on them to call us. We have called my doctor’s office several times to check on the referral and called the neurologist’s office, who told us they are not scheduling for two months and would call us.

So, we called the neurologist today and they said they are unable to schedule me because I do not have a referral. We were so confused because my doctors said the referral was approved and to call. The neurologist’s office said they could see that a referral from my doctor was placed on 7/16 at 12:45 pm but that immediately after at 12:50 pm someone in my doctor’s office wrote “do not schedule” on the referral. The neurologist’s office explained that that moved my file to a “canceled” area and so there is no current referral.

We immediately called my doctor’s office who said they could see that it was “accidentally switched” to “do not schedule” in their system. They said that my doctor needs to write me a new referral now. This is so beyond frustrating.

It is mind-boggling to think that I had brain surgery over a year ago and have only been able to see a neurologist twice. Who so causally misdiagnosed me with ALS and even then, was only able to talk about two symptoms with me.

I am lost in the healthcare system.

My doctor’s office scheduled an appointment for me with the doctor on Monday to talk through all of this and we are waiting for a manager to call about a “break in the system”.

In the meantime, I am still having headaches/migraines and a ton of neurological symptoms some of which are progressing and some new ones. The infusions have been helping, but that is not a long-term plan. My physical therapist thinks that because the infusions give me some relief, I can be a little more active and work on physical therapy exercises at home. Which helps to keep my pain and nausea down enough for me to be able to do things like physical therapy. A bright spot in all of this has been my physical therapist. She has been amazing, understanding, and caring. I am grateful for her.

Fatigue is still a big struggle for me, and I must constantly balance what I do and where I put my energy. It is hard not to feel the pressure to want to do everything and not miss out. There are so many people who seem to try to understand, but don’t really get it. They say I look well and do not get past that. There are also people who believe if I prayed more or was more something somehow that God would heal me. Amid all of this, I still know I am enough for God exactly the way I am. His love for me is not measured by my current disability. I am working on letting myself rest and knowing it is okay to take breaks. I also know that my condition is not a reflection of how much faith I have.

There are these moments where I feel this overwhelming stress and panic when I think about all the unanswered questions like, what is causing all these symptoms? Then dealing with my symptoms and all the appointments that need to happen and are not happening. Everything is a complete mess, and I am lost in the healthcare system.

Earlier today, I teared up listening to this part from We Are Messengers’ song, Close.

God, You know the the tears I’ve cried
And the times I couldn’t breathe
Oh, You never left my side
So I rest here at Your feet

I know You’re working all things for my good
In the way that only You could

Maybe the why just don’t matter
What if it’s not for me to know
Maybe the point is just to trust You
Find the faith to let it go

Cause sometimes falling feels like flying
It’s the only way I know
So I won’t hurry through the heartache
If it’s what it takes
To draw me close
To draw me close

Thank you all for hanging in there with me on this journey. Your prayers are impactful, and I am grateful for them. I feel God’s hand on me every day.

God bless you all,

Shae

Today is my 23rd birthday. 

I know God has a plan for me, but I feel so overwhelmed. There are all these unknowns and unfinished pieces spinning around me that just won’t come to a rest. 

It has been a while since I posted an update because I was waiting to have some more answers. We don’t know why or what is going on with my body, but my baseline is lower than it was. I am still going to physical therapy and I am getting weekly infusions, which I think has been helping. The infusions are designed to keep my head pain and nausea from escalating. They also help improve my sleep and increase my appetite, I often don’t feel hungry because of constant low level nausea.

Last month, I went to the ER because I had a weird episode. I was out with my mom and I started to get what felt like a migraine. It began with head pain, chills, nausea, and then I felt like I had gone to the eye doctor and had my eyes dilated. I was texting with a friend and started to get very confused. It felt like words were not real and I could not remember my friend’s name. I knew her name, but it didn’t feel like it was a word. My mom said that my speech was altered, and my words were breaking in the middle, kind of like broken glass. Then it progressed quickly to where I could not speak at all. The confusion and inability to talk only lasted a few minutes and most of my symptoms passed in about an hour and a half.

I went home, took some of my rescue meds and went to bed. I wanted to try and sleep it off before I went to the hospital. The ER is not always friendly, so I was trying to avoid that. I called my doctor the next day and he sent me to the ER to get an MRI and an EKG. Everything came back with normal results, and they gave me two rounds of a migraine cocktail to break the headache. It didn’t break completely but it was enough for me to go home. The ER doctor asked me if I have ever been diagnosed with Epilepsy or have a history of seizures, which has never come up before.

When I called my neurosurgeon’s office about that episode, they recommended that I be monitored for seizures. My primary care doctor agreed and said that he could order the monitoring, but that he thought it would be better to have a neurologist order it because of all the nuances. The problem is that there is a neurologist shortage and I have not been able to get in with one who understands (is comfortable treating someone with) Chiari Malformation. In the last couple of months my local neurologist retired and recommended replacement is moving The doctor he suggested is even not calling to schedule appointments for two months and they are scheduling appointments for December/January. It’s very frustrating. Much of the difficulties I’m encountering are systemic. Overwhelmed systems, lots of job shifting, and overall staffing shortages, along with an uncommon condition.

My case was up for review with the Mayo Clinic a few months ago. It was a process to collect all my MRIs and all the notes from every doctor’s appointment from the last two years. My doctor had to write a one-page letter stating why he thought I should be seen at the Mayo. It was submitted on a Friday and the following Monday I received a rejection email from the department of neurosurgery telling me to seek local medical care. The problem with that is my case was supposed to go to the neurology department not neurosurgery and I have already exhausted the specialists here.

We called Mayo and explained that I already had neurosurgery and needed to see a neurologist not a neurosurgeon. If I needed neurosurgery I would just go back to Colorado. The Mayo said they would resubmit it and that once it was reviewed, they would decide if there was another department that would be better equipped to treat me. They said they would call us in three days.

Two days ago, I received another rejection letter in the mail for neurosurgery. Which I was already suspecting because they never called back. It was so frustrating because we had been discussing with them that it was not supposed to go to neurosurgery. We called them today and explained that we were worried that the right team of people had not reviewed it because of it being sent to the wrong department.  They told us that Chiari Malformation goes to neurosurgery and since I already had surgery it was not a fit. They said that once it was moved out of neurosurgery there were two neurologists that reviewed my case and denied it.

The Mayo Clinic said that I should have my doctor diagnose me with whatever he thinks is happening with me and then he writes them a new letter with his recommended treatment plan and his desired outcome. If my doctor knew what was happening with me, he would treat me here. We need help with the diagnosis.

So, we got off the phone with the Mayo Clinic and called the Barrows Neurological Institute, in Arizona. They were also recommended to me by my neurosurgeon’s office. They told us that they are a sub clinic, which means they treat conditions they do not diagnose and based on what I said I would probably need to be seen in at least six of their sub clinics. I could probably get in for the Chiari Malformation/Migraine clinic, but they would only treat that symptom. They could refer me to another one of their sub clinics, but they would not diagnose anything or look for a greater cause.

I am meeting with my doctor on Tuesday to update him and hopefully come up with a new plan. I agree that I should be monitored by a neurologist for seizure activity. We are considering reaching out to neurologists all over Oregon to try to find one. I am an established patient at OHSU, but I lost confidence with them after the neurologist there so casually misdiagnosed me with developing ALS and told me he would only discuss two of my symptoms and not an underlying cause. I am considering requesting a transfer of care and trying a new neurologist there.

Please pray with me that God will give us guidance and show us the way.

Pray for my appointment on Tuesday, for my doctor to have wisdom.

Pray that I would be able to get in with a neurologist.

Please pray for my family, this is putting so much stress on everyone, and we are all feeling weary and discouraged.

Grace to you,

Shae

And I will lead the blind in a way that they do not know, in paths that they have not known I will guide them. I will turn the darkness before them into light, the rough places into level ground. These are the things I do, and I do not forsake them.

– Isaiah 42:16

Today I started weekly IV infusions for preventative measures against the horrible migraines I keep getting. Hopefully these infusions help. It is a migraine cocktail for pain, nausea and hydration.

This morning I got an email from the Mayo Clinic telling me that they received a request for an appointment with their neurological clinic. They gave a phone number to call so we could “proceed”. I thought that I was accepted and was calling to schedule an appointment. I felt so happy and relieved. When we called and talked with them they said that my case is still in review and that they are waiting on a one page letter from my doctor stating the reasons why he thinks I should be seen at the Mayo Clinic.

Please be praying with me. It’s very discouraging and stressful. The waiting to know what’s going to happen is so hard. I just want to know if I am going to the Mayo and I want some answers. The waiting in the unknown is hard.

Thank you all,

Shae

But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. 🤍

Isaiah 40:31

Hello friends,

It is hard to believe today is the one-year anniversary of when I had brain surgery. On one hand it feels like it was only yesterday that I was in a hospital in Colorado, and on the other hand time has felt like it has slowed, and the months have drag on endlessly.

I went out to dinner with my family to celebrate how far I have come in a year! We went around the table, and everyone told a story from that day in Colorado. My parents shared how intense it was for them waiting in the waiting room for seven hours. Its funny to me because from the time I was taken into the surgical room to waking up in recovery it felt like ten minutes. When I woke up in recovery, I think that was probably one of the funniest moments of my life. I woke up because someone was talking, after a few minutes I realized it was me who was talking to a nurse sitting by my bed. Once I realized I was the one talking, I still couldn’t stop myself from talking. I have never had that in my life where you feel like you’re watching someone else speak through you. The nurse was so patient, but he also seemed a bit exasperated. I was going on and on about how my head was falling off and someone needed to do something about it. The nurse kept telling me that my head was fine, it was still attached to my body and if it did fall off, they would call the neurosurgeon to come sew it back on. I countered with the fact that the neurosurgeon lived in West Virginia (I have no idea why that state was floating in my mind) and because of that he wouldn’t be able to come. I remember I kept thinking, “why am I saying that?” and “stop talking.” Thinking back to his facial expressions I wonder how long I had been talking before I started waking up.

This past year has been the hardest year of my life. I was diagnosed with a rare neurological condition, had endless appointments and tests with different doctors and specialist, underwent brain decompression surgery, had most of C1 removed, and was misdiagnosed with ALS. It’s been surreal and a whirlwind of emotions.

 Through it all though there has been countless blessings and answered prayers. I connected to the right neurosurgeon, Then I fit the criteria for surgery. Finally, I was able to go to Colorado to have the surgery because my family, friends, and people I have never met came together and helped me get there.

Currently, I go to physical therapy once a week, I am still working on strengthening my neck and overall strength and balance. Before I had surgery my symptoms were so bad, I couldn’t do much and so I became deconditioned. I am working on building up my stamina, endurance, and just overall strength.

 The surgery itself was a success and did what we wanted it to! The biggest thing surgery helped was constant pressure headache that would not relent. They physically removed part of my skull and C1 to take the pressure off and make more room for my brain. That helped a lot of my symptoms and did what we wanted it to do.

When I first met with the neurosurgeon in Colorado, he discussed with me that some of my symptoms were not caused by Chiari Malformation. Which is why the previous neurosurgeon didn’t think Chiari was causing my symptoms and that surgery wouldn’t help. The neurosurgeon in CO said that these symptoms wouldn’t be helped by surgery because they were unrelated to Chiari. That is why I saw a neurologist at OHSU and was wrongly diagnosed with ALS. There is some neurological thing going on that is puzzling the doctors. The left side of my body is weaker than my right and my left hip sometimes isn’t stabilizing. I continue to have headaches/migraines, visual distortions, nerve shocks in my limbs, numbness, and I still am not sleeping well. There are a lot of other weird symptoms that shift around.

My doctor and neurosurgeon have decided to send me to the Mayo Clinic in Minnesota. They said that I have exhausted the specialists in this area (OHSU and UW) and have been trying to determine which Mayo Clinic, Harvard, Sandford, or the Cleveland Clinic to send me to. My primary care doctor suggested I reach out to all of them to see which of them thought they could help me. My neurosurgeon was able to narrow it down to the Mayo Clinic in MN. He says that would be the best place to go for a “neuromuscular disorder”. I am relieved because all the paperwork and talking to so many different places felt so overwhelming, and we hadn’t even started yet.

The next step is to meet with my doctor and then he will write the referral letter to the Mayo Clinic.

This year has been an emotional roller-coaster. There has been moments of pain and sorrow and joy and relief. There has been periods of isolation, loneliness, heartache, and anger mixed with peace and rest. I am learning to look and cling to the joy and the moments of happiness in the chaos as opposed to waiting for the storm to pass to find it. It does not always feel like a storm because I’m passed the worst of it, but it sometimes feels like I’m in a desert. I still don’t have the answers and they seem like they are just off in the distance, like a shimmering mirage that is just out of focus. Hopefully going to the Mayo Clinic will be getting closer to some of those answers.

Thank you to everyone who has helped me throughout this last year. I am so thankful for all the support I received and the love I have felt.

God bless you all,

Shae

“The steadfast love of the LORD never ceases; His mercies never come to an end; they are new every morning; great is Your faithfulness.” Lamentations 3:22-23