Colorado & OHSU

Last month, I had my two month follow up in Colorado, with the neurosurgeon. I had another MRI and then met with the neurosurgeon to review where I was at in my recovery. The neurosurgeon said the MRI looked really good and that my healing was ahead of where he thought I would be in my recovery. He said that it will still be a full year until I am fully recovered, but that I am headed in the right direction. 

The surgery did exactly what we wanted, it was a success!! I am so thankful for all the people praying and supporting me throughout this journey and everyone that helped make it happen! God has clearly had His hand on me and was working in the details. 

Pic: Left-Before surgery, you can see that the bottom of my brain is crowded and there is no fluid moving around. Right- at the eight week checkup. After removing a pice of my skull and C-1, and making more room in my dura (the lining around our brains) by patching it with a piece of muscle from my scalp, then finishing with a titanium plate, there is now room for fluid to move around my brain. The white is CSF ( cerebral spinal fluid).

A week after I returned from the appointment, I had a neurology appointment at OHSU. 

Originally that appointment was to rule out MS, but since I made that appointment, six months ago, I was directed to CO and had the surgery. We decided to keep that appointment because the neurosurgeon said that he thought I was having migraines with the Chiari headaches. The neurosurgeon also believes that some of my symptoms are not caused by Chiari. So, I went to OHSU to become an established patient and to discuss migraines. 

My mom and I spent two hours going over all my neurological symptoms that don’t fit with Chiari. The neurologist asked a ton of questions and did some test and then brought another doctor into the room, who redid the same tests and some more followed by more questions. The tests showed that I don’t have any reflexes, which we already knew and is one of the symptoms not caused by Chiari. I have no tickle reflexes in my feet and weakness in my arms, legs, grip, feet, and significantly more on the right side of my body.  I showed videos on my phone that I took of muscle spasms that I have been having for a year now. They went through all my videos and asked questions. 

After having a discussion in the hall they came in and said they agree that some of the symptoms I am having are completely outside of Chiari. For example, the loss of reflexes, if it was caused by Chiari they would be hyper reflexes, not absent. 

OHSU diagnosed me with “Benign Fasciculation Syndrome”. Which is persistent muscle twitching, tingling, or numbness in muscles. They made it very clear to me that it could just stay that and be that forever. They also laid out for me that it could progress into ALS.  They said they want to see me every three months to monitor the diagnosis. They said I need to monitor my symptoms and if anything changes or I have any new symptoms I need to let them  know immediately, because it could rapidly change. 

It was shocking and scary. I met with my primary care doctor after that appointment to review everything with him. My primary care said if they were really that concerned then they probably would’ve done a nerve conductivity test in that appointment instead of waiting three months for my next appointment. 

Another thing is: while there are still symptoms that are not caused by Chiari, I’m also still recovering from brain surgery, so that could be causing the weakness. My neurosurgery team also said they have never had a patient with Chiari and ALS. 

In the meantime, the plan is for me to continue physical therapy and add in occupational therapy and swim therapy. My doctor said if there is a neuromuscular disorder the best thing to do is build up muscle. 

I’m still struggling a lot with fatigue and Neuro fatigue. After I do physical therapy, I lay in a dark room with no visual stimulation for an hour. At first I was really annoyed that I have to do this, but now I’m grateful for the rest. The physical therapy feels like a full time job, it is hard and exhausting. I feel frustrated at how weak I feel afterwards. 

It was hard to receive such great news from the neurosurgeon and then have it stomped out by this recent diagnosis. I keep needing to remind myself of how far God’s already brought me. Honestly, I just felt so defeated after that appointment and I’m still struggling with that feeling. 

Please continue to pray for me and my family as I continue to navigate these rough waters and pray for some wisdom for the doctors. God had already brought me so far and I know He will continue to guide me through whatever comes. 

May the Lord bless you,

Shae Sobottke

2 Month Update

It is hard to believe it has already been almost two months since I had brain decompression surgery.

A few weeks ago I started physical therapy for my neck, it’s still super stiff and sore. I still cannot move my head up or down. I will not be cleared for that motion until I meet with the neurosurgeon in CO next week. My mom and I are leaving on Monday for my eight week follow up.

I have come a long way. Still a long way to go until I am a hundred percent, but I’m grateful for the progress I have already made. My hair has grown back in so much that you cannot really even see the bottom incision. There is a small part of the incision on the very top of my neck you can see, if you look closely. There is a larger bald spot where the top incision is, the part where they “harvested” the muscle tissue. 

At the hospital they told me not to feel discouraged with physical therapy, because I would not be doing much. The exercises I am doing is just moving my head to the side and then to look straight ahead again, and then repeat with the other side going back and forth for a few times. Then I tilt my head slowly to the side and then hold it straight again. I am working on doing them a few times a day.  I am also working on walking short walks around the neighborhood. 

I had a conversation with the Chiari Institute last week because of the high level of pain I was having. I am still having some incision pain and a super stiff neck that is sore. The Chiari Institute thought the physical therapy was moving too fast and that I was doing too much, so we slowed that down. Even though I was just going for car rides and puttering around the house, they said that was using up a lot of my energy. They told me to keep in mind that I am recovering from major surgery and that the healing is slow. Another thing we talked about is now because of the symptoms I was having before surgery; I was not very active.  That is coming into play now as I have been “deconditioned”, so I am having to slowly get reconditioned. 

I have been having some of the weird symptoms I was having before surgery, but I think that is to be expected while I continue to heal. They are unsettling to me and I am eager for them to stop. It is hard sometimes to not feel discouraged with how my body feels and the healing that stills needs to happen. I have to take my thoughts captive and remember that it will take a while for healing and not to rush it. The neurosurgeon said it would be a full year to recover. I need to have patience and hold on to hope for this next year.

Last weekend we went to Spokane to help move Genna home for the summer. I was only able to see a few people while we were there, but it felt so good to be out and see people who are so encouraging to me. I am so appreciative of the friends and family that have reached out to support me. This is a lonely season; I miss seeing my friends and family.

Thank you for your continued prayers,

Shae Sobottke


April 2nd Staples are out!!

Shae’s primary doctor and I both assured her that getting her staples removed wouldn’t feel too uncomfortable. I’ve had them three times, after C-sections, and I just remember feeling relief. Well, staples in your head are a different story! Shae thought that it really hurt! Her incision looked pretty angry until the next day, but is calming down now.

Day #16

Shae’s neurosurgeon did a remarkable job! After it heals, you will hardly be able to see the scar. She’s almost a little disappointed because she hopes to use her zipperhead battle scars to spark conversations and raise awareness about Chiari Malformation.

Shae Sobottke, Facebook 4/2/21

I got my staples out today!!
A very dear friend, Shaylin, sent me this song as a beautiful reminder today, and every day to come, that “these wounds are a story You’ll (God) use”
This scar on my skull/neck is a physical reminder of God’s steadiness and faithfulness throughout my whole journey with Chiari Malformation. There were moments where my future and life looked bleak. It could’ve been a time of no hope, but I held on to Christ and put all my faith in Him and He filled me with hope. 💜

“So I’m thankful for the scars
‘Cause without them I wouldn’t know your heart
And I know they’ll always tell of who you are
So forever I am thankful for the scars”

Today is Shae’s best day this week! She’s been awake all day and feels pretty good. Her physical therapist in Colorado prepared her for good day and bad days and to just keep going forward. She’s been in a phase where her pain is under control, but higher than has been. She has been sleeping up to 20 hours per day and uncomfortable when she is awake. We’ve been going on short walks. Right now her goal is to walk to the mailbox three times per day. Yesterday was her longest walk yet, she walked about four houses down our street and back. Afterwards, her legs felt like jelly and she was shaky, but she did it!

The back of her head is a little puffy and feels like a soggy peach. That is another milestone that her team told her to watch for that because it is part of the healing process.

Her nausea has gone away, so she no longer takes medication for that around the clock. The surgery site is near the area of the brain that controls nausea, so strong nausea is a common after effect of the surgery. Shae is so grateful that it has passed because throwing up is a big NO-NO! after surgery. It felt like the most important instruction was to NOT throw up. Another big step toward feeling normal!

The day before Easter, Shae’s Great-Grandma Jeanne, Great-Aunt Eileen, Great-Uncle Chris and Grand-Uncle Frank came by to pray over her. Great-Aunt Eileen brought us this Lambie Cake she made for us! It was so nice to share in a small part of Easter traditions this year! Our Easter was very quiet.

Easter Lambie Cake

Thank you all for your continued prayers! Shae still has a very long journey and we are so grateful for all of your love and support!


(Shae’s mom)

Spring Flowers for Shae

Shae continues to heal. Her pain yesterday was intense, but she is doing better today. Pray for a controlled pain level. She wakes up every couple of hours for medication, but was able to sleep through most of the night.

Shae rests a lot during the day. Spring has sprung and with that, SUN! Her physical therapist told Shae to get as much sun as she can, so the family was out planting today. Shae enjoyed the sunny skies while watching. Pretty soon she’ll have her own spot in the garden.

Stephanie said she and Isla are planting purple (chiari color) flowers to remind them of Shae’s chiari journey and for her to watch while she recuperates. The Sobottke’s really know how to care well for one another. You’ll have to check out Shae’s instagram page to see what her sister did to support her. @shaesobbotke The gesture sure melted my heart!

Looking ahead, Shae will go back to CO for her eight week checkup in May. That includes an MRI, then meetings with the physical therapist and neurosurgeon.

The four month mark will be a turning point. She will be released to be a little more active. Healing takes a full year and it was explained to her that it will take a year for her energy level to become predictable. Praise God for modern medicine and for the resemblance of normalcy to take place once again!

We’re so much closer to Shae’s Go Fund Me goal! Let’s hit this out of the park! Share Shae’s story and help us reach that goal. We’re so thankful for everyone who has given thus far. Keep checking back here on her blog for continued updates as well.

Shae definitely has a light about her. It’s definitely Jesus. May he continued to be glorified in and through her life!

We love you Shae! We will continue to cheer you on!


Wild Winds

Shae and I arrived home at noon yesterday, a day later than we planned. Our third and last leg of our flight was quite the adventure! Thank you Jesus for entrusting us with such skilled pilots who handled everything so well, a safe landing, friends who are like family, an awesome ER doc, and Shae’s continued good recovery!

Leaving Aurora with our first amazing pilot. There were strong headwinds all the way to Wyoming.
Shae using a special Chiari pillow with a cutout for her incision.
During our first flight, Shae’s ears popped for the first time in years!
With the awesome pilot who flew us from Wyoming to Idaho.

The weather during our last flight shifted and the air was turbulent. Our cautious and highly skilled pilots decided to divert the flight to The Dalles, OR due to weather concerns. Shae was throwing up (very concerning post surgery) and felt light headed. She thought it was her blood pressure dropping again, but it was her oxygen dipping. They had an oxygen tank onboard and after we gave her some she felt a little better. 

Shae says these guys are her new favorite people!
As a child, my husband’s grandma always told him that when he saw sunbeams that meant God was talking to him. As the wind picked up, those beautiful sunbeams we reassuring to me that God was holding us close to him.
Going in to land at The Dalles on the east end of the Columbia Gorge.
The Dalles, OR

After we landed, we all took Shae to the ER to get checked out. The ER doctor examined her thoroughly and all looked normal. Her incision also looked good. They gave her pain and anti nausea shots which kicked in very quickly.

Our hero pilots charmed the front desk into delivering DQ they brought us! Shae’s reaction to the food was a great indicator that she was feeling better!

Shae said it smelled so good that her doctor lost his thought when he came into her room!

The hospital kept her for observation until she felt better and then released her. The pilots were amazing and waited until our friends arrived from Vancouver. We went to a hotel with instructions to let Shae sleep and watch her closely.

Praise the Lord for dear friends who are family!
Almost home!

After we arrived home yesterday, Shae was able to shower by herself with a shower chair and handheld shower head. Isla sat guard outside the door in case Shae needed any help. Shae washed her hair with baby shampoo, she will do that for the first month.

She practiced doing many of the things she learned how to do at the hospital, without moving her head up or down, such as brushing her teeth and walking up the stairs.

Glory to God for all of the healing that has already happened! Shae is continually amazed at how different she feels already. So many of her symptoms are already healed! I’ll let Shae detail that for you all when she feels a little better.

Today (Tuesday) is one week from the surgery. She has slept most of the day and her pain was high this afternoon. Please pray for her comfort and continued healing! We are so grateful for all of the prayers and support of our family and friends. It was a little intense during our last flight, but we knew it was going to be okay.


(Shae’s Mom)


Yup, you read that right, Shae was discharged! We’re so thankful that her healing was “on schedule” and they let her leave the hospital. She didn’t have any BP crashes leading up to discharge the night before, which may have left her in one more day. The incision pain keeps her up at night but her spirits remain high.

Shae connected with some of her nurses before leaving the hospital and met some from east Africa. Her night nurse is from Uganda and invited Shae to her Ugandan Church there in Colorado. They traded information to keep in touch! Shae was supposed to go to Uganda last year but her trip as canceled because of covid. It’s amazing how God uses even our pain to connect us with people from around the world!

Her neurosurgeon came to check before she left.

When Shae got back to the hospital she was able to make it down to the hotel restaurant for some food. She’s still struggling with some nausea so prayers there.

She’s getting meds every two hours through the night to handle the pain, so they set alarms and are keeping track on a med app. It’s hard to get back into a restful night sleep but it’s the only way to manage her pain. The doc said he’s surprised they were able to do that through the night. Yesterday he said he was amazed by her recovery so far! Praise the Lord for his favor! Shae is able to walk by herself and can dress alone for the most part. She can’t move her head up or down, so Isla helps her with her socks and shoes.

We’re thankful that Riley made it back to Alaska safely. She’ll be in quarantine for the next two weeks, per army policy. This will be tough, so pray for her heart to rest easy and that the time will go by quickly for her mentally. Stephanie noted how grateful she was that they (the family) were able to gather and be there for Shae during this time.

Shae travels via Angel Flight tomorrow and it’s a long day! They will be taking 3 planes in total. Pray Shae would find comfort on each plane and that the nausea would subside until they get home. That she’d have the endurance to get home (or just altogether!). For safety for the plane and a general focus of the pilots as they carry her.

Shae and Stephanie have been overwhelmed by your sacrifice to give to the gofundme fundraiser. Thank you for partnering together to love on Shae and remove some of the burden. Your support, prayers and care mean so much and they are very grateful. Feel free to spread the word so they can reach their goal. The money will be used to cover the cost of the surgery, and future doctor visits back to Colorado.

Psalm 46: 1-3 has been the meditation of Shae’s heart in the last couple of days. “God is our refuge and strength; an every 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 it’s waters roar and foam and the mountains quake with their surging.”

Praise be to God!

We love you Shae! We’re still praying and rooting for you. You are deeply loved.

We’re with you Shae!

You guys, thank you so much for rallying around Shae. Your prayers are felt! I’m happy to report that today Shae walked around the entire floor and ate pizza for lunch! This is huge news! It’s a good sign her healing is taking place.

Shae has been on the ICU floor since she left the recovery room. Tonight she’ll transfer to the neuro floor. You can be praying for her blood pressure. It’s still a little low and because of that, they are avoiding some medications that would help buffer her bouts of nausea. Be praying her blood pressure bounces back to where it’s supposed to be. Pray she’ll meet the requirements physically for her discharge tomorrow.

After she’s discharged the Sobottke’s will stay in the hotel another two days and then fly out Sunday. Shae and Stephanie will fly Angel Flight West home. Shae’s sister, Riley flies home to Alaska tomorrow (Friday).

We’re thankful for cheese pizza, Shae’s strength in staying focused on her healing, for the much anticipated quieter neurological floor and the possibility of discharging tomorrow! And for people like you who have committed to laying Shae before the Lord. He alone is to be praised!

I want to encourage you to consider giving to help relieve the financial burden this surgery carries. Will you help us reach Shae’s goal? You can donate on her gofundme page. And please feel free to share on your social media pages.

Thanks everyone! We’re still here, Shae, rooting for you! And guess what, so is Jesus.


Hey there, faithful Shae friends!

I got a text from Stephanie this morning saying Shae was in the ICU. She was scheduled for physical therapy but when they helped her sit up, she became nauseous and her blood pressure dropped really low. Her pain level was higher than they wanted it to be.

All day Shae’s BP has gone up and down, but not stable enough to feel comfortable with her leaving ICU. They upped her meds to help with pain management and gave her fluids.

Some good news to report, Shae’s numbness on the left side of her face is gone! Praise the Lord! She has been numb for 5 years. It’s cool to experience the positive effects of having the surgery. Now onto the healing. Healing in any form is hard.

As of 1:45 this afternoon her BP was still low. They are continuing to adjust meds and will keep her in the ICU over night. This evening she was able to sit up and eat some ice cream for dinner. Psalm 121 has been on Stephanie’s mind as she sits by to comfort Shae. Her BP started to climb this evening, but you can imagine how hard that would be to watch as a Mama, seeing your child suffer. Prayers for the family as they support Shae and offer her up the Lord with every step of Shae’s journey. And of course sweet, Shae. We’re rooting for you, girl! Pray for comfort and continued healing.

Let’s help relieve the financial burden this surgery and healing will cost Shae. The money raised will help with follow up appointments to Colorado as well. Her gofundme is climbing, but will you help us reach the goal for Shae?

Let’s also thank the Lord for Shae’s life. I pray we all feel led to allow the Lord to be glorified in our lives, no matter the situation, in the same way Shae is living out her faith. Thanks, Shae, for letting your light shine for everyone to see His good works in and through you. We’re praying for you, girl!

Out of Surgery!

This morning Shae, Marc and Stephanie headed to the medical center in preparation for Shae’s brain surgery. Around 12:15 pacific time she started prep. They had to shave her hair, and connect electrodes all over her body. There was a doctor present during the procedure just to monitor the electrical signals down her spine to ensure everything was going well. Every 90 minutes or so, Stephanie would get updates.

The surgery is now finished and the doctor said it went really well! God is so good! They will transfer her from recovery to the ICU today and then Stephanie and Marc will have to take turns seeing her.

Prayers for continued healing over her body and thankfulness to God for protecting Shae during surgery.

Thank you for joining the Sobottke’s in this journey. They so appreciate your love and care during this time.

I’ll write more updates as they come.


Update: Stephanie and Marc are able to go back to see Shae together! Yay! They are headed back now.

Prayers for Shae

Thank you so much for keeping Shae in your thoughts and prayers. Stephanie sent pictures of her girls tonight sticking close to another and cherishing the time together before Shae’s surgery tomorrow.

When I asked Stephanie how they’ve spent their time she said:

On Saturday, Shae and Stephanie hung out at the hotel restaurant drinking way too many cups of tea while waiting for the rest of the family to arrive. Riley (Shae’s identical twin) arrived at the Denver airport first (from Alaska), she waited for Marc and Isla (littlest sis) to arrive from Portland, then they all waited for Genna (middle sis) to arrive from Spokane. They took the shuttle to the hotel together. We all had dinner together so grateful thank we all arrived safely and that we are able to be together through this time. 

Shae’s been resting. We’ve all been playing games together-Monopoly Deal and Cards Christians Like. Lots of laughter and silly jokes. 

Lots of snow this morning, we were all excited, except Riley. After being in Alaska, she is ready for a break from snow and wants to hear rain and see grass. 

We’ve just hung around the hotel, trying to keep relaxed and keep our stress levels low. The girls swim while Shae rests. 

We trust in our sovereign God who knows and sees all. Who comforts us in pain and suffering. Who has Shae in the very palm of his hand. Psalms 46, 121, 139 and Isaiah 43:2 have been a source of comfort as the Sobottkes read scripture together in preparing their hearts for tomorrow. You can be praying for Shae (and the rest of the family) that they’ll get a restful nights sleep.

Shae checks in at 11:15 and the surgery starts at 1:15. It’s expected to last 3 1/2 to 4 hours.

During surgery they will bolt Shae’s head to a three pronged head clamp to hold her head during surgery. She will be lying face down. They will remove a piece of her skull from the back of her head and the top of her C-1 vertebrae in her neck to make more room for her brain and to allow the cerebral spinal fluid to flow freely around her brain. After they remove the skull, they will cut through the thick protective lining around the brain called “dura” to open it up and make more room. Stephanie said it’s like, “letting out a pair of pants”. After that, they’ll make a second incision, near the top of her head to harvest muscle tissue from her scalp. They will use that tissue to make a patch where they cut open the dura. Then they’ll attach that tissue and connect a custom made titanium plate over the area. Shae’s spinal fluid flow (CSF) is completely blocked on the right side. The extra pressure is causing muscles on the left to become deformed. They are unsure if the doctors will need to repair that. In all, this procedure will help freeze Shae’s symptoms.

It’s a normal thing to be nervous going into such a surgery, but will you trust the Lord with me to protect Shae’s body during the surgery and through recovery? Pray for peace in Shae (and her family’s heart) as they release everything – the knowns, the unknowns and fears to God.

If you haven’t followed Shae on her instagram page, I encourage you to do so. There she shares more real time pictures of her life and what God is doing in her as she seeks to trust Him with her life. @shaesobottke

As you can imagine, this procedure and the upcoming visits to Colorado for follow-ups are expensive. To love on Shae and help relieve this burden in a practical way, consider donating to Shae’s Gofundme fundraiser: Feel free to share it on your social media pages to reach Shae’s goal. Every little sacrifice helps!

I will update you tomorrow after her surgery concludes. Please set your alarm on your phones to pray for Shae at 1:15 specifically. Oh and don’t forget to subscribe so you can stay in touch with her progress!

Thanks everyone! We’re so thankful for your love and support.

For Shae,