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

Valley of Blessings

It is hard to believe that it has been four weeks (yesterday) since surgery. It feels like it happened yesterday. 

My pain is under control for the most part, my neck still bothers me a lot and there are times where I feel like I can feel every strand of hair on my head. I have started to go off all the meds, which means I am able to start sleeping through the night. Before, I had to wake up several times each night for different meds. I am working hard now on getting my sleep routine back to normal. I am still taking naps, although not as much as before. 

The Physical Therapist, at the hospital in Colorado, told me that this next year is going to be a year of unpredictable energy. He said that my first milestone would be two weeks and then four. I have hit the fourth week and I am now able to wash with shampoo that’s not baby shampoo.  My hair is so happy now! I have a lot of hair and it didn’t like being washed with baby shampoo. I have lost a lot of hair and there has been lots of breakage. I am thinking about cutting some layers to blend it all together.

My next milestone is my first physical therapy appointment next week, which will mark five weeks from the surgery. They warned me at the hospital that there is still a ton of movement that I still cannot do right now, so not to feel discouraged when there is not much they are doing with me at the appointment. 

A year ago, I would never have imagined that I would have brain surgery. There are moments where it does not feel real. It feels like a dream or a passing thought. Then I run my fingers over my scar and feel my hair that is growing back. It is still hard to believe all that has happened in such a short amount of time, for something that has been a struggle for almost 6 years. 

It is a full year of recovery and I may not know what symptoms have/will clear up until this next year has passed. While surgery relives a lot of the symptoms, it is still not a cure. The neurosurgeon warned me that not all my symptoms may go away and some of my symptoms he said may or may not be caused by Chiari. It is hard to know for sure. Some of the side effects of the medications I’ve been taking, since the surgery, mimic Chiari symptoms. As I continue to heal and move away from all of the medications that layer will be lifted too

I am very hopeful though. I feel that surgery has already helped, even though I still feel some symptoms. I must keep reminding myself that I have a year to recover and heal. The brain fog I was having seems to be gone. I already feel more present in the moment, despite the exhaustion.  

God has been so good to me through all of this. I have seen Him moving when everything seemed not to be moving at all. He has reminded me of His love for me through those around me. All of you who have and continue to pray for me, thank you so much for all of your love and prayers. 

When my family and I first began discussing the possibility of making multiple trips to Colorado, the expenses required seemed out of reach. I had already made multiple trips to Seattle to meet with the neurosurgeon there and hit a dead end. I knew from the beginning that it would be different in Colorado, but I still didn’t know what it would like like. When we seriously discussed it and prayed about it, my mom said she felt confident that God would provide. Though so many of you, He has. Several times a donation would unexpectedly come in to meet the immediate need that we were facing. Often in the exact amount that was needed. God’s hand has so clearly guided this journey. Thank you to everyone who helped me financially. I feel so blessed and somewhat overwhelmed. I am still waiting to find out the full extend of the medical bills

Please continue to pray for me. I am still uncomfortable and in some pain. It is a hard adjustment to not be able to move and do as much stuff as I usually do. It is hard to watch life move on for everyone around me and then feel like it is moving really slow for me. Pray also that I would get some rest. I am still not sleeping through the night. My biggest request is patience for healing. The doctors said this would be a time of quiet rest and recovery, but I have not felt the rest lately. I am still waking up several time night and feel exhausted during the day.

I have been looking for the small blessings in each day. The last few days have been super sunny and warm. I have been able to sit outside on a blanket and enjoy the weather and the purple Chiari garden my mom and Isla planted for me. Watching it grow and and blossom has been a beautiful thing to look forward to watch.

May God bless you,

Shae Sobottke


I Needed The Quiet

I needed the quiet so He drew me aside,
Into the shadows where we could confine
Away from the bustle where all the long day
I hurried and worried when active and strong.

I need the quiet though at first I rebelled
But gently, so gently, my cross He upheld,
And whispered so sweetly of Spiritual things
Though weakened in body, my spirit took wings,
To heights never dreamed of when active and gay.
He loves me so greatly He drew me away.

I needed the quiet. No prison my bed,
But a beautiful valley of blessings instead - 
A place to grow richer in Jesus to hide.
I needed the quiet so He drew me aside.

~ Alice Hansche Mortenson

Shae Has Landed!

Yesterday was full day for Shae and Stephanie. Shae was able to fly via Angel Flight, a non profit whose mission is to help people get to medical procedures and appointments around the country. Angel Flight was an answer to prayer for Stephanie. She was wondering how they’d manage the chaos and cramped space on a commercial flight. With Angel Flight, they were able to travel alone. They flew in three different small airplanes to reach Colorado. Chiari is an adventure, that’s for sure! During her second flight, she was accompanied by a furry passenger. They quickly warmed up to one another.

Upon arriving in Colorado, the pilot drove Shae and Stephanie to their hotel and picked up dinner for them! Thank you Angel Flight for your love and care.

Shae’s surgery is scheduled for the 23rd. You can be praying for peace in Shae’s heart as she anticipates the next weeks of healing. For her family, that this time would draw them closer to one another and the Lord. For the doctors that they would be clear of mind and prepare well for the surgery, both in their personal lives and at work. We trust the Lord for Shae’s life and are so thankful for medical advancements that allow her this opportunity to get relief from her symptoms. May Shae’s life bring glory to God!

Thank you for joining Shae in this journey! I know she feels your love and support. Stay tuned throughout the next couple of weeks to hear updates as they come and more details of how you can be praying.

Here are some more pictures of her traveling adventure.

(Written by Sara, a new friend of the family)