These last few days, leading up to this morning, I have been filled with stress and anxiety over the neurology appointment scheduled for this morning. I could not imagine how the appointment would go – whether good or bad. My prayers over the appointment have been simple. I feel like sometimes I do not even have the words to to pray what I am feeling. My prayer was for a kind and understanding doctor and a clear next step.
Those prayers were answered! The neurologist was so kind and gentle. He listened. I brought my notes compiled from all my symptoms, that I am always asked to keep. He went over all of the symptoms with me and asked me follow up questions.
He started the appointment by telling me that he spent some time reading through my records and that he thought he had a good idea of what’s been happening. We talked about Chiari Malformation and he asked a ton of questions about my symptoms before surgery and how they have changed after surgery. He did a physical exam and then I gave him my printed notes I brought.
He took a few minutes to read them and the said that my symptoms are “intriguingly frustrating”. We discussed the symptoms and he did another physical exam and said that he would like to do some more testing. I am still waiting for the EEG that was ordered at the last appointment, they gave me the number to call and check in with that.
The neurologist also placed an order for a four hour neurocognitive test to evaluate and get a baseline of where my cognitive symptoms are at.
The neurologist did not give me a diagnosis or share too much of what he was thinking. I really appreciate and respect that, especially after having so many misdiagnosis’s and doctors jumping to wrong conclusions, or thinking out loud. I follow up with him in three months.
The after visit notes were the most comprehensive I have seen. He restated the key parts of my notes I brought and summarized my new symptoms really clearly. In his notes he wrote that he thought I would benefit in the future with a multidisciplinary team approach because of the complexity.
While I still do not have a solid answer, I do have a next step and I felt heard by the neurologist. Thank you to everyone for your steady prayers and encouragement.
“But the LORD stood with me and strengthened me.” – 2 Timothy 4:17
I am grateful to share good news! Physically, this week has been a rough one. I’ve been struggling with a migraine, nausea, head pain, numbness and tingling and a heavy fatigue. I had the infusion clinic on Monday, physical therapy and did my second round of the Emgality injection on Tuesday. I’m really working hard on building my neck muscles and I’m sure that has contributed to the headaches.
Now the good news -A few days ago, we followed up with calling the neurology department (my primary care’s office asked us to) and requesting a conversation with the manager to discuss my last appointment. We put a request in and they said it would take a few days to get back to us. That was no problem to me because my hopes were pretty low. I’ve been feeling a lot of despair over this whole situation.
Yesterday afternoon, we got a call back from the manager of neurology and neurosurgery wanting to hear what we had to say. We spent over an hour on the phone with her and shared with the whole story of my diagnosis and the lack of care I’ve had. I was getting restless during the call, I felt a sinking feeling descend on me and dread over the outcome.
My physical therapist said that I should ask about a “care coordinator”. I have talked with my primary care’s office and asked about a case manager they said that is for people with a chronic diagnosis. Afterwards we realized that would still apply to me. I’ve just been coming up against so many roadblocks.
The woman we talked with yesterday was so kind and understanding. We told her that I want the inaccuracy in the notes from my appointment fixed or a note in there saying it was inaccurate. We also went over how I have been stuck going back and forth between being sent to neurology and neurosurgery.
She listened to us and then laid out her plan. She asked if she could scheduled me for an appointment with a neurologist who is new to our system, but has a ton of experience as a neurologist. She said he is known for his bedside manner and would listen. She said that’s who she would send her child to see. She also said she would have a pre meeting with him to go over all my notes and records before I met with him.
She asked if I wanted to look him up and research him and then call her back to schedule. I just wanted to schedule, I’m tired of waiting.
She told me that she will be my advocate in the system and to call her for anything.
The appointment she scheduled me for is this Thursday!! I was not expecting it to be that soon.
I am still wanting to be hopeful, but I’m feeling cautious. I am praying this time will be different and a step in the right direction. Please be praying with me for this appointment. I have been listening to Austin French’s song Rest For Your Soul because it speaks to my heart. I have been feeling so troubled and weary over everything. I am praying for change and waiting on a miracle, with a list of unanswered questions. I never imagined that I would be diagnosed wit a chronic neurological condition or have brain surgery. This is not the life I imagined for myself or wanted. It has really been weighing on my mind and heart and I just feel weary and burdened. I am clinging to the promises of God. That He will be my shelter and my peace. That I will find rest for my soul and a peace in Him, because I do not carry this alone.
Are you tired and troubled? Weighed down by a heavy load? Praying for change, searching for faith Waiting on a miracle
Are you drowning in questions? Can’t believe where the road has lead There’s one who knows, the heavy you hold And He says
“Come to me All who are weary and heavy burdened All who are hurting Come to me I’ll be your shelter My yoke is easy, my load is light And you can find rest for your soul Rest for your soul”
There’s a peace that can hold you And a power greater than your own When you feel so small, back to the wall That’s when Jesus calls
“Come to me All who are weary and heavy burdened All who are hurting Come to me I’ll be your shelter My yoke is easy, my load is light And you can find rest for your soul Rest for your soul”
You were never meant to carry that weight alone You were never meant to carry it on your own Come to the cross, lay it at the feet of Jesus Come to the cross, lay it at the feet of Jesus There is one who knows, the heavy you hold And He says
“Come to me All who are weary and heavy burdened All who are hurting (hurting) Come to me (come) I’ll be your shelter (I’ll be your shelter) My yoke is easy (ooh) My load is light (my load is light) And you can find rest for your soul (rest for your soul) Rest for your soul” (rest)
“Rest for your soul (rest for your soul) Rest for your soul And you can find rest”
There was a HUGE answer to prayer today!! I finally got an appointment with a Neurologist after a year-long wait! I have only been able to see a neurologist twice since I was diagnosed with Chiari Malformation two years ago, and that was after I had brain surgery. Once Chiari was the diagnosis I was sent to a neurosurgeon.
I had my appointment with my doctor today and we discussed the issues with referral, all the systemic issues, and not being able to get an appointment with a neurologist until March. He told me that he was going to reach out and talk with two neurologists at OHSU that were recommended to him by the pediatric neurologist. He was also going to reach out to other neurologists too.
Before I had surgery none of the migraine medications I tried helped because my headache and pain were physically caused by my brain stem being compressed and squished by my skull. My brain decompression surgery fixed that. Post-surgery I am feeling other types of headaches that were probably overshadowed before.
My neurosurgeon and a neurologist both agreed that I have at least three different types of headaches/migraines. While my brain has been healing, I have not tried many headache medications, just one and it didn’t do much, it just left me groggy and irritable. Today, I asked my doctor if he thought there was a medication I could try for my constant headaches.
Since I have had brain surgery my blood pressure has been on the lower side. I have always been on the lower side of normal, but now I am just a few numbers off from it being a concern (my last reading was 97/56). Beta-blockers are usually what is used for migraine prevention, but my doctor said that a side effect they have is dropping blood pressure and heart rate, which makes him nervous. He did put me on a different kind of preventative medication, and I should know if it is helping in a month. It is not supposed to stop the migraines completely. It is just supposed to lower the pain down a notch and cut down how many migraines I get.
We also discussed getting a patient advocate to help navigate everything. We left the appointment and then about an hour later a manager from the office called and said that my doctor had talked in depth with her about the issues and she wanted to talk them through with us. After we talked, she asked if she could make a few calls and then call us back.
Five minutes later she called back with an appointment NEXT MONTH, on the 20th, with a neurologist at Good Samaritan Hospital in Portland. She said the neurologist said that he wants to go over everything and help find a root cause. Praise the Lord!! Thank you to everyone who prayed with me!!
I also had a great weekend! Yesterday, I went up north to a concert in Chehalis, WA with my best friend, Mercedes, to see Mac Powell and We Are Messengers. It was such a fun day and so refreshing and needed time with my friend. We have been friends since we were twelve when we met at Bible camp, the same week I gave my life to Christ. I have always been grateful for our friendship, but these last couple of years I see what a treasure it is from the Lord. She took good care of me.
The concert was amazing! There was this moment when I was standing singing songs that I listened to while I was waiting for surgery, hospital stays, and the times I could not make it out of bed or off the couch. There I stood in a crowd of believers worshiping the Lord for all He has done for me. He has been so faithful to me and steadfast in his love.
At the concert, a woman came up to me and said she felt the Holy Spirit wanted her to ask me about my health and to pray with me. It turned out that she also has a chronic neurological condition. The three of us ended up talking and praying together for two hours after the concert. It was beautiful.
We were also able to meet the lead singer of We Are Messengers, Darren Mulligan, which was amazing. We talked together for a few minutes, and I felt encouraged and hopeful afterward.
There were moments yesterday at the fair that were hard on me physically. I had a lot of nerve pain, headache, weakness, and numbness, but I was determined to have a good time and Mercedes was a great help to me. I even went on two rides which is something I did not think would happen. We spent a long-time walking lap around the rides trying to find the ones that would be gentle and less likely to trigger an episode. We went on the Ferris Wheel and a swing.
I felt it afterward, but it was not the overwhelming, sending me to the ER kind of pain. This afternoon I went for my weekly infusion and now I am going to rest and have a quiet week. God is good. His mercies are new every morning.
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.
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.
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,
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
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.