Hey everyone, This is Genna, Shae’s younger sister. She asked me to compile the updates my mom and I have posted on social media over the last few days and post them here.

January 14, 2024

The other GoFundMe had some problems, so my friends Amy and Heather have organized a new one. Here is the link. I am only 2 days away from 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.

January 15, 2024

Shae went into surgery around 1:40. Should be about 4-6 hours and then she’ll go directly to ICU. I’ll post updates as we get them.

This post comes to you from Shae’s personal PR team, mainly from Genna

January 15, 2024

Shae is out of surgery! The doc said it was super smooth and that he thinks a lot of good was done today. We are now just waiting for Shae to wake up and be moved to the ICU to begin her recovery.

This post was once again brought to you by Shae’s PR team, again meaning Genna

January 15, 2024

Hello everyone, it’s Shae. Genna is helping me with my social media and updates, while I’m in the hospital and the beginning of recovery. I’m a little loopy with meds and I’m sleeping a lot, which is good. So far, the pain management is working, but my pain is really high which is why I am awake.

I wanted to come on and say thank you. My family has been reading me all the comments and messages. I feel so loved and blessed by all of you. 🥰 Thank you for your love encouragement and support. I can feel the prayers of God’s people lifting me up.

The medical team asked me what music I would like to hear when I woke up from surgery and they were playing worship. The ICU is close to visitors right now and I am alone. I’m doing okay. My vision is blurry so it hard for me to much right now, but I wanted to asked if anyone has a favorite quiet worship song I can play tonight. Or a favorite scripture? Genna will help me reply to everyone tomorrow. I just need some encouragement right now. 💜

January 16, 2024

Recovery is underway! Shae is stable and cleared to leave the ICU today. Her oxygen levels dropped pretty low last night but they were able to get her back up to normal. Shae being able to leave the ICU today is such a blessing. For her last surgery, it was three days before she was cleared. They will be moving her to the Neuro floor for monitoring.

Steady updates brought to you by Shae’s PR representative

January 17, 2024

Shae Sobottke had a rough night. They thought she might recover faster because she’s so young, so they moved her after we left last night, but she lost a lot of CSF fluid during the surgery and was fragile when she went in. It’s taking a while longer for her to recover and she’s not drinking enough, so they added IV fluids and they moved her back to IV meds. After the meds, she immediately fell asleep. She will probably be there an extra day now. One of us will be able to stay with her tonight and advocate for her. Thank you all for your prayers and support. 💜 *Random hospital pic because I don’t have anything else and I’m too tired to figure it out.

This update is brought to you by Shae’s other PR representative

Right now Shae is resting after her rough night and is making plans for relaxing after she leaves the hospital. Recovery is moving forward but is a touch slow going after her lack of IV fluids last night. We are doing everything we can to keep her comfy and will give updates as needed.

This compilation of updates comes straight to you from Shae’s PR representative, the younger but not youngest sister

I finally got the date for brain surgery. I will be having brain surgery on January 15 in Colorado.

There are a few issues, one is that scar tissue is growing like a weed and blocking the space where cerebral spinal fluid (CSF) is supposed to flow, around my brain and up and down my spine. There is also a CSF leak at the original surgery site. Both are rare complications, especially 2 1/2 years after surgery. It’s probably been developing over the last year.

This is causing the same symptoms I had before the first surgery, like being very weak and having a lot of pain in my head and neck.

The surgery will be about 4-6 hours. If everything goes the way they expect I will spend 4 days in the hospital, the first 2 will be in the ICU. They are doing things differently this time and having me stay in CO until the 10 day post-op, before they clear me for travel back home. Then I go back to Colorado for a two month follow up.

I like this plan. Last time I had a reaction to a medication that caused my blood pressure to drop really low. They kept me in the ICU for an extra day, so we ended up flying home four days after surgery. That was too hard on me. We had that crazy flight home with horrible turbulence and a diverted landing. I hit my head a few times during the flight and had to spend a few hours in the ER. It was very scary. This new plan, that keeps me close to the Chiari team in CO, feels safer. Especially when the ER doctors in my area are so unfamiliar and uncomfortable with any complications.

Going through brain surgery once was shocking and surreal. Going through it again is different. Me and my family are so much more aware of what it means and we’re stunned. Stunned in the sense that it’s almost hard to move. It takes your breath away and everything feels heavy. It’s like a type of grieving. Getting new MRI scans and all of the consultation process felt more real. Now that I understand I have to do this, another part of my mind keeps asking if there might have been a mistake. We are sad and overwhelmed.

The surgeon said that this is a rare complication to a rare surgery and it is very statistically unlikely for it to happen again. I feel a strange sense of relief in knowing what is happening in my body and causing these symptoms, but I am terrified of having to go through this again. I don’t even know how to put it into words.

I’m thankful for the friends and family that have been such a support on this journey.

I know I’ve only made it this far because God’s been carrying me through the dark places.

I met with my neurosurgeon in Colorado to discuss my current symptoms and recent MRI scans.  After reviewing everything, we decided that the best option is a revision surgery. That means that I am going to have another brain surgery. 

The surgeon said he saw a fluid  collection in the first MRI from a few months ago. (He showed it to me at our last virtual appointment).  He could not find it on the most recent MRI from the ER. Although he can clearly see that the CSF flow is diminished. CSF is cerebral spinal fluid, the fluid that flows around your brain and up and down your spine.

He believes the reason the fluid collection is not showing is because the leak is active. The CSF is flowing in and out of the pocket. It’s basically a spinal leak that doesn’t leak through the skin. There also is an effacement (pressing on nerves) that is probably from adhesions in the dura (the thick lining around our brains), which could be the cause of the blockage that is causing the decrease of CSF flow. 

The surgery will be to drain the fluid and repair the dura. There is also an element of exploratory surgery to look for any adhesions, and anything else that could be causing problems. 

I will be going back to Colorado for surgery. The surgeon who did the first surgery is no longer at this hospital, but I really like the surgeon there now. He is very kind and thoughtful. He offered to meet again in a couple of weeks to go over any questions that come up. 

The surgery is not any more high risk than the first one. It’s about the same surgery length (around 6 hours), three days in the ICU, a few days at a hotel before traveling home, and then a full two months recovering at home. 

Their earliest appointment is in December, but I asked if we could do it later. I would like to wait until after Christmas. The surgeon said we can do it in January, I just need to have it done in the next few months. I am really looking forward to Christmas and hopefully traveling to Colorado and back in January will be easier than right before Christmas. 

We have to wait for the pre approval with the insurance company, before we can schedule the surgery date. The surgeon said that given the circumstances and the scans he doesn’t think there will be any problems getting the approval. 

In the meantime, my primary doctor gave me a prescription for an anti nausea medication that is a sticker you stick behind your ear, like what people use for seasickness. We’re hoping that helps settle down the nonstop nausea and hopefully will keep me from having any more episodes of non stop vomiting. Maybe it will even help me to be able to stay hydrated without a weekly IV. 

I still have infusion appointments to help me manage and cope with the head pain, nausea, and dehydration. 

I have been going to physical therapy twice a week for the last two years. I have worked so hard to get to where I am. Several months ago my progress began to decline. I developed more balance problems, weakness, and fatigue. Some of my cognitive symptoms have become more pronounced, like short term memory, concentration and neuro-fatigue. 

I talked with my physical therapist and she said it’s too high risk for me to continue my  sessions right now.  We are going to wait until after I have surgery, so we know more about what’s going on. I love physical therapy and seeing the tangible progress of my work. My whole week was built around these appointments, so it feels very strange and hard to  not have my routine.

The symptoms that are new and progressing are: numbness that spreads over my body, feeling winded, and changes in my vision. Sometimes that happens when I’m cooking on the stove. I have to sit or lay on the kitchen floor until it passes.  When I stand up my vision goes black, my face feels flushed and I get numbness all over. It also happens often when I’m walking. It’s been getting worse. If I’m laying flat on my back there’s still pain and lightheadedness, but not as bad as when I’m standing or walking. 

I am still processing that I am having brain surgery again. My thoughts and feelings are all over the place. I feel relieved to finally have an answer to why I feel so sick. I am also terrified and feel the dread of having to go through brain surgery again because the surgery and recovery are brutal. One moment I might feel absolutely terrified, angry and resentful, and the next I feel a strange kind of peace. I knew there was something wrong. I couldn’t put it into words, but I knew I didn’t feel right. There’s peace in finally having an answer and a solution. Not the answer I wanted at all, but I’m hopeful that this surgery could help me. 

Prayer requests: 

Please pray for wisdom in all the decision making and that God would provide for all the needs surrounding this. I had a phone call with my new case manager from my insurance. She is going to share her notes and pass me to a coworker who is licensed in both Washington and Colorado. My insurance policy doesn’t cover any travel expenses such as transportation or lodging. After we schedule the surgery, I am going to reach out to the nonprofit that flew me and my mom there before, Angel Flights West.

Pray for me and my family as we all try to wrap our brains (humor intended) around this. Pray for strength and peace for them as they walk through this with me again. 

Please pray for peace and comfort for me. My heart feels so heavy right now. My feelings are all over the place from feeling relief that there’s a “solution” and being terrified of going through it all again. 

Please pray for us as we navigate the arrangements. We haven’t even begun the process of scheduling the surgery and figuring out the details of the trip.

“Cast all your anxiety on Him because He cares for you. “

1 Peter 5:7

Love, Shae

I just got home from the ER tonight and I need some prayer. Over the last few months I have been having a lot of new symptoms. My neurologist ordered an MRI last month so we could make sure everything post surgery had healed well.

The MRI came back showing a small collection of fluid at the surgical site, that was a change from last year’s MRI.

There are not really supposed to be any changes in my scans. My neurologist wasn’t sure if that was a “normal” thing for after surgery, or concerning, so he referred me back to my neurosurgeon in CO.

The surgeon who did my surgery is no longer there, but I met with a new surgeon and he said that he wanted me to have a CINE MRI to see if there was a blockage of CSF fluid. The way my insurance works my primary doctor here is the one who has to order it. There was a lot of paperwork problems and the MRI has still not gone through the pre-approval with insurance. I’ve just been patiently waiting and calling my primary doctor’s office for updates.

I have been feeling very sick lately. When I met with the neurosurgeon (virtual appointment) he said I was back to pre surgery symptoms. I’ve also been feeling very faint and weak. It tends to really spike when I’m sitting up or standing, so I’ve been pretty much laying flat the last few weeks.

This morning my nausea and head pain woke me up from sleep. My blankets and clothes hurt my skin and my brain felt like it was spasming. It quickly progressed to me violently throwing up. We called my primary care, neurologist and neurosurgeon and finally ended up at the ER.

They did the CINE MRI showed Pseudomeningocele, an abnormal collection of CSF caused by a defect in the dura, the thick lining around your brain. The scan also showed the CSF flow is diminished, I think the fluid collection is blocking part of the flow and that is what is making me feel so sick.

The ER doctor consulted with the hospital’s neurosurgery team and they determined my case was too complex for them to handle. They said it is a serious issue, but not acute tonight and they just aren’t equipped to treat me. I was able to come home tonight, I just have to go to the OHSU ER if symptoms escalate. They recommend that I go back to CO for treatment.

The next step is sending all the reports and scans to the neurosurgeon in CO and talking with the neurologist here. I don’t know what the treatment will be or if I will need to go back to CO? Maybe CO can consult with OHSU?

Please pray for guidance in all of this and some relief from pain. There really aren’t meds for me that help with this.

Thanks,

Shae

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