Thank you everyone for praying for my appointment with the neurosurgeon in Colorado. The prayers were needed. Travel was hard on my body.
We flew Sunday and rested Monday. Tuesday was appointment day. We were up at 4:30 a.m. our time to take a Lyft to the clinic across from the hospital for x-rays. It had to be done early so the radiologist could read it and send it to the surgeon to review before our appointment. Usually, I would get the scans done here and send them over ahead of time, but the office missed it.
After that, we walked to Starbucks to wait three hours for the neurosurgery appointment. We spent the time organizing my symptoms, notes, my questions, and questions from my physical therapists and neurologist.
After sitting in Starbucks for hours, we finally went across the street to the hospital. When we walked into the clinic, the receptionist turned around and called for a nurse. The nurse ran around the corner and said the surgeon was called into emergency surgery and I would need to come back on Thursday.
Right away, my mom and I said in unison, “We flew from Washington.” There was a scurry around the corner, and we waited a few minutes for a nurse to come and say that we could come back at 3:30.
We went back outside and had to figure out what to do while we waited. We didn’t want to take another Lyft just to come back later. We walked around a bit and then ended up back at Starbucks. It became a very long and exhausting day. I thought it would take up the morning and early afternoon, and then I would have time to rest before we traveled back home.
Finally, the time came to meet with the neurosurgeon. He is pleased with my progress. My scar is healing very well. The x-rays show that all the screws are in place and exactly where they need to be. We talked through my symptoms and how to treat or monitor them. We talked through the scary symptoms that sent me to the ER at OHSU. He had a fresh take and thinks they are related to post-surgical complications, not nerve damage. Most of the symptoms, he thinks, can be managed by medication and physical therapy. It was really good news and an answer to my prayer. Thank you everyone for praying with me for healing and through this very stressful time.
This is the most recent x-ray I had done in Colorado. The curving in my neck is from surgery and being in the brace. The brace is to keep those screws in place, while they solidify into place. I will do physical therapy in the future to strengthen and straighten the neck. The second screw going down is the one that gives me chills to look at 😬
I’m now able to lift 10 pounds and can start weaning off the neck brace. My neck muscles are very weak, so it’s going to be a slow process. The brace has a knob in the front that you can pull up and twist to adjust it up or down. Right now, the brace is supporting my head. During the day, I’m going to start turning the knob to make it loose, and then when my neck gets fatigued, adjust it back up (beginning with 2–5 minutes).
When my neck gets a little stronger and used to holding itself up again, I’m going to move to a soft collar, which doesn’t support your head as much but still protects it. Eventually, I will work to one of those travel pillows—not for support, but to keep my head movements in range.
Physical therapy is starting slow. I’m going for walks daily with my walker. 5 minutes out and 5 minutes back. There is also therapy for my eyes. I have a popsicle stick with the letter “A” on it. I hold it out in front of me and pull it toward me until it blurs, then I restart for a few sets. Then I do the same thing sideways. It’s going to be a long time to build up strength—especially since I was so deconditioned before this surgery, plus the other two surgeries. My body is weak, and this next year feels daunting. I probably have two years of 4–5 therapy appointments per week in front of me once I work up to them all. That will include balance/neck therapy, POTS protocol, speech/cognitive therapy, occupational therapy (handwriting, grip), and strain-counterstrain therapy. They almost all come with homework too.
I asked the surgeon how much longer he expected my pain to last and how high it should be. My pain is still incredibly high. My mom keeps a schedule and wakes me up throughout the night to stay ahead of the pain. I still wake up multiple times a night in pain, and there’s usually a point in the day I can feel myself wanting to slip into a meltdown like a child because the pain gets so bad it feels like I can’t talk. The surgeon said he absolutely expects it to be that high right now. He said to expect the pain to come down and feel better by the 6-month mark.
At 12 weeks, in December, I’m going to have a CT to check the bone graft and make sure it is still in place. That will also be when I have another check-in with the surgeon virtually.
These last few weeks felt so turbulent and so exhausting. I have a long way to go, but I made it past the two-month mark. I’m so grateful for all the prayers and messages. I received messages of prayers and encouragement in the moments I needed them the most. I came home to a gift from a friend and a card from an unknown sender. I don’t know who sent the card or how you got my address, but thank you so much for the card and encouragement.
The last month has been about surviving, and I haven’t been up to responding much, but thanks for all the love and support. 💜
Shae
Whoever sent this card to me, thank you so much, for your thoughtfulness. I received it the day I got home and it warmed my heart.
I’ve just been hanging on and trying to keep it together until I see my surgeon again. My mom and I flew to Colorado yesterday for the follow-up tomorrow. It took me over an hour to get through TSA at PDX. I can walk short distances but the neck brace prevents me from looking down. I trip over small things and still can’t walk inclines. Also, when I stand up it’s a slow process, I need a minute or so before I can start moving. I’m still using my walker and slowly regaining stamina and stability. Not being able to look down or move my head sideways is very scary and makes me feel vulnerable.
I use a wheelchair to go through airports. The employee who pushes my chair helps me with everything. Yesterday, he helped me take my coat and shoes off and loaded everything on the belt for me and then waits on the other side. When I got to the metal detector, they asked if I could stand and walk. I told them I could be would need a minute to let my body adjust so I wouldn’t faint. Then casually dropped that I had three brain surgeries and my neck resembles Frankenstein. He moved my wheelchair over to the side and said he wasn’t going to take any risk, so I was going to get a pat down by a female agent.
I sat in the corner of the TSA line for over 20 minutes with my mom on the other side while we awkwardly tried to communicate with hand signals what was happening.
The agent finally come and took me and my mom to a private area, where she did a full pat down and swiped my body for drugs. The she had a handheld detector and scanned it over my body. It went off at my surgical site several times. She asked me if something was under my brace or if there was metal in the brace. My mom told her I can only have my brace off for 5 minutes a day, so I could take it off and they can use the wand to check it. The agent said they would have to run it through the machine with suitcases, but they would skip the line and it would be 2 mins.
She called her supervisor who came over and my mom showed her the x-ray of my neck and skull. Once she got an overview and saw the picture she let me through. She said there was so much metal in my neck that it was definitely setting off the wand.
We made it to the gate with a few only a few minutes to spare. I can’t remember how I navigated walking down the aisle of the plane last time, but this time I couldn’t stop tripping and I was followed closely by a crew member who asked me every few seconds if I need help. I did need help, but I didn’t know how I could get help in such narrow area. I was almost crawling to my chair. I had a tight grip on the chairs of both sides of the aisle. I am glad the first leg of traveling is over. Once we got to our room at the hotel my mom and I started laughing at all the random mishaps of our day.
The last few weeks have been really hard with managing symptoms, breakthrough pain, and some neurological complications.
Every doctor, specialist, and handout says to go to the ER for new or worsening symptoms. I was at physical therapy working with my therapist I’ve known through all my past surgeries. We started PT earlier to learn things like how to roll out of bed, get dressed, take a shower—basically how to live with a neck brace and fusion.
When I was with her, I shared some new symptoms I’m having and others that are getting worse. She recommended going to OHSU if it got worse or I felt uncomfortable. I really, truly do not like going to the hospital or ERs. I did go that night because I was having new symptoms and things were changing. I was scared and wanted to handle it by dealing with it “later.” Then I thought, if something was going on, I didn’t want everything I’d just gone through to have been for nothing.
When I got to OHSU triage, they took me right back to a bed in the hall, did some testing, and said they needed to do a scan—but they had to ask neurosurgery what kind. We waited a few hours, and the resident came back to tell me neurosurgery said there were no new symptoms or points of connection for treatment or a scan, and if I wanted to wait, it’d be 18 hours. The resident then pointed to the lobby and said very clearly, “You would wait 18 hours, but not them, because it’s different for you.” I calmly pointed out that all the symptoms neurosurgery was wanting were the same ones I’m having. The resident just repeated what she said, and I told her I wasn’t going to deal with this and wanted to be discharged. She left without saying anything.
A minute later, while we were gathering our things, the resident returned with her attending physician, who stopped us from packing up. She relayed the same message from neurosurgery, only way more aggressively. I asked her, if I didn’t have any of those symptoms, why did they order several tests, including an ultrasound? She replied that I needed to have symptoms to be treated.
My mom interjected, telling the doctor she was medically gaslighting us. To which the doctor replied, “Yes, I know. This is the reality of medical politics.” She added that neurosurgery all said I needed a scan, but that I should go to the ER of the hospital where I had surgery, even though they knew that was in Colorado. None of the results from any of the tests they did were posted in MyChart. When I told a doctor filling in for my primary care what happened, they said that’s pretty much what they wrote on their end.
My mom and I just looked at each other, and without a word, we left. The attending doctor followed behind us like she was security escorting us out to the lobby. I went up to the desk and asked for her name. They gave us the number for patient safety, but they didn’t seem to care.
I had forgotten that OHSU had told me my medical case was too complicated and they didn’t have a surgeon with the knowledge of Chiari Malformation to treat me.
If I didn’t have my family helping, I have no idea how I would’ve made it through all of this. My mom is up with me late at night when I can’t sleep, and I wake her up when she’s sleeping if I’m in pain or need help with something. My dad moved furniture around so I can use he walker without worry of running into things. Isla helps a lot too. I’m still under heavy restrictions with what I can and can’t do.
The neck brace is hard to live with 24/7. There are times I want to tear it off. Other times I don’t notice it. Sometimes it feels like a wet scarf. It’s not helping my sleep.
The surgeon explained that the bones and hardware need to fuse together over the next few months and to not take my brace off under any circumstances. I have a foam brace to wear in the shower, and I get five minutes to lie on a heating pad.
A sweet lady at my church made me a rice heating pad. I use it for my incision, neck, and every joint that hurts from all my weird ways of sleeping. My church has been so helpful and supportive in this time. We’ve had wonderful ladies bring us meals, and our church sent Mowtown came and helped with yard work. They also made the path from the driveway to the front door wider so I can get through with my walker.
Even with all the hard things happening, there are still so many blessings. It’s easy to just let myself focus on all the negative things. But then I get out of the car and can walk to the front door without navigating a path not big enough for my walker. On days with long appointments or a day we finally get to stay home, lovely ladies from church bring us meals. I’ve received cards that I keep close for a rainy day.
It’s hard sometimes feeling lonely and overwhelmed in this season, but there are still blessings and kindness.
My mom read this quote to me the other day when I was feeling the weight of everything—past, present, future, and the loss of a future I thought I would have:
“Occasionally weep deeply over the life you thought would be. Grieve the losses. Then wash your face. Trust God. And embrace the life you have.”
Making my way down the halls. The matching pjs with the neck brace was not at all planned, but makes me so happy.
Hello Friends, the surgery date was complicated. We showed up on the Monday the 08/08 for surgery. The insurance approved the surgery for my brain, but not the neck. There was some paperwork that was missed so the neck fusion was still pending. They still had me go through all the motions like I was having surgery. I put a gown on and got all my vitals hooked up and met with the whole surgical team. Then the surgeon came in, still on the phone with insurance, and said we had to postpone it until Wednesday. It was frustrating to work myself up and finally feel ready and then have to step out of the surgery bubble that was created to go back to “not yet”.
Tuesday night felt much longer than Sunday night did. My fear was much closer to the surface. I had not felt fear like that before the last two brain surgeries.
Wednesday morning finally came. We were up at 3am our time in order to check into the hospital by 5:30am. This time it all moved quickly. It was finally time to go. After I said all the I love you’s and hugs. I laid on a hospital bed as I was wheeled down a hallway where I passed all of the surgical team lined up against both sides of the walls waiting for me. It was a very emotional moment.
Me with my amazing Neurosurgeon.
The surgery itself had no problems and was five hours long and ended three hours early. They kept me in a recovery room downstairs until I was not fully under the influence of the anesthesia, my siblings were disappointed to miss that part. When they moved me to the ICU I was wheeled into an elevator with a huge family holding balloons and flowers. The nurse asked if we could catch a ride up with them to the Neuro ICU floor. They all happily agreed and the nurse told them, “this girl just survived her third brain surgery and we’re taking her to her family.” The whole family started clapping and cheering and wishing me the best. It was a wonderful way to leave the recovery room and change floors.
My family was waiting for me in the ICU waiting room along with our former pastor from when I was 8 years old. He and his wife came to sit with my family while they waited. They brought pizza and cared for them during the surgery. They came by everyday even if it was just a few minutes to check on us. He met us at our Airbnb yesterday to help my mom and Isla move me out of the hospital. They were a beautiful testimony to just showing up and being a steady presence in the unknown. Just as God told us “weep with those whose weep and rejoice with those who rejoice”. When I got released from the hospital yesterday he helped us get resettled in the AirBnb.
Me, Pastor Fitz and Isla.
This next picture is the clearest x-ray image I have at the moment. It’s from yesterday morning at 3am. I get the stables out next week and will get more x-rays while I’m not fresh out of surgery on meds. The huge screws you see are stabilizing my neck.
X-Ray of Hardware. You can see the stables if you look closely and the plate. The lines are the neck brace. Getting an X-ray at 3:30 am right after brain/neck surgery was one of the scariest things.
It was mostly C1 that was unstable and could almost be fully rotated. So, moving down the X-ray the first screw is in my skull (cranial cervical junction) then C1, I had the bridge removed in the first surgery, but they could still screw it to the small remnant. C2, was screwed to C1 to stabilize it and my skull was screwed and strengthened. The top of the three long screws is into the CCJ (cervical cranial junction). The surgeon was also able to use the patch that was there from last time, so I didn’t need another skin graft and he didn’t need to go into my thigh. He did use synthetic bone for a bone graft and layered a collagen disc over the dura patch to help it heal and strengthen.
They gave me a new collar for my neck this morning cause the other one got a little messy. I’m going to get a second collar and extra pads and cushions since I have to make friends with this collar for three months. I thought it turned out funny that all my pjs I brought are greens and they coordinate.
The neck brace stays on for three months while the bone and screws set. 24/7 all the time no breaks. Sometimes I don’t notice it other times it’s all I can think about. Definitely going to take some time to get used to. It does help with pain. The second day in the hospital the physical therapist adjusted it up tighter to my face so my jawline was resting in it and it brought so much relief.
I stayed away from reading too much about the fusion because I didn’t wasn’t to freak out too much. I decided to just do it and push through it now. After seeing the X-rays I think that was a good decision for me. I was shocked. What they can do in spine and brain surgery is incredible. The neurosurgeon is truly remarkable.
I didn’t lose as much hair this time. The scar goes down longer, but it’s still looks like a clean cut.
Grateful for my family who has surrounded me with help. I wasn’t able to meet with the Physical Therapist or Occupational Therapist to learn how to shower, brush teeth, etc with the brace. So, we did our best last night when we got back to our Airbnb. Keeping my head in a neutral position is the hardest thing. My head feels very heavy and my neck is weak.
Me with Genna before she left to go back home. Loved having her with us.Isla helping me get in the car and putting my seatbelt on. She’s helping me with all those details.
It is critical at this time for me to not move my neck while the fusion is setting and healing. I didn’t know how to take a shower and I’m having to learn how to do all this “normal” stuff.
I did face plant last night and hit the ground really hard. I was able to get my hands in front of my face and I had my neck brace on, so I don’t think there was much damage to my neck. My hands and knees are bruised. I was next to my walker, but felt too weak and just fell over hard. It was terrifying.
My throat is also extremely sore and swollen from the breathing tubes. There’s a lot of sores in my throat and mouth. I’m struggling with the pain and fatigue. I’m not sleeping very well at night, my sleep seems to be better during the day. To be honest, this neck fusion is way more than I was expecting. I’m trusting God to walk with me through this, but the fall last night shook me. Please continue to pray for me as I navigate this long journey of healing.
God Bless,
Shae
“The Lord is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.”
Update: I had my pre-op yesterday. They did an EKG, chest xray, bloodwork, MRSA swap, etc. Now, that’s off my list!
Since the neurosurgeon thinks undiagnosed EDS is why my surgeries keep failing, I’m going for a special upright MRI, before the surgery on the 25th. They’re trying to decided if my neck is unstable and I need to have it fused. My mom called around found the closest place is in Renton, WA but they’re a 5 week wait. Renton referred us to a clinic in San Jose, CA that can get me in next week.
We are now driving down to CA to get this MRI, so the surgeon can see it before surgery. Luckily, more likely God arranged, we have family friends that live in the area that we can stay with.
We are going to drive down Sunday, get the scans on Monday, and return Tuesday. Then we leave that Friday for CO.
It’s going to be a lot for my body.
This is all falling into place this morning and there’s still a lot of moving pieces and we are having to roll with the waves. Please pray for us as we are trying to accomplish everything that needs to be done before the surgery date. My mom has been spending everyday on the phone going over details and the list of calls keeps growing.
Please pray for clear communication between all the doctor’s offices, insurance, case managers, etc. It is overwhelming how many things need to be done and arranged for this to all workout.
Pray for safe travels as we go to CA and back and then on to CO.
Pray for all the moving pieces and everything that is still up in the air. All the things that need to come together.
Thank you for all your prayers and support. My friend made a GoFundMe to help with this very unexpected and fast approaching brain surgery.
On a plane with Angel Flights to CO for the consultation.
Friends, thank you for praying with me over this appointment. My neurosurgeon is very kind and compassionate and understands what is happening in my body.
The long story short, I need another brain surgery. My neurosurgeon explained the MRI shows that directly under the titanium plate the tissue is collecting fluid like a blister. It’s about the size of a dime, but is causing Hydrolephusis (fluid on the brain) and irregular CSF flow (the fluid that travels around your brain and down your spine).
The tissue they harvested from my scalp is too fragile and has worn thin. The surgeon says the cause of the fragile tissue is probably due to Hypermobile Ehlers-Danlos Syndrome (hEDS). This diagnosis would be the reason my body is not healing and accepting the titanium plate. The tissue surrounding the plate is too fragile. The neurosurgeon said we are going to do the surgery “ASAP, the sooner the better” (meaning as soon as they can get me scheduled- so urgent, not emergency). They scheduled me for the soonest appointment on the 25th of this month.
So, in 15 days I will be having my third brain surgery.
The surgery will require removing the plate because at this point the titanium plate is hindering my progress. The scar tissue and muscles are already adapted to their new position (think like training flowers with a trellis) and we need to give them more room to sag. The dura patch is also going to be replaced. He still is figuring out the details of the best way to do it, but he wants to double patch it. Preferably with my own tissue from my scalp, possibly from my thigh, and maybe putting a seal over it. He is going to really think through how exactly he conducts this surgery because of the high risk and my body not healing as expected.
A few weeks ago my scar flared up with red bumps and scabs that are still there. He said my scar is too thin and fragile. It looks what he would expect it to be after two months of healing, not over a year and a half ago. The surgeon said my scar may be bigger and wider, but it should be stronger and healthier.
While the idea of a third brain surgery is overwhelming and I dread it, I’m glad that there is a clear mechanical problem and a solution. We’re hopeful that the surgery will help me get back on track.
Please continue to pray with me. I’ve been struggling and have known there was something wrong and suspected I would need another surgery, but I’m also still reeling.
Here are some specific ways you can pray:
Peace. I know the physical pain that comes and I’m fighting moments of panic. I know it’s going to be a lot to physically push through and my body is already in pain and weak. There’s a whole road of recovery ahead.
Guidance with all the paperwork and insurance processing that needs to happen in the next two weeks.
I have to do bloodwork, chest X-rays, etc before I’m cleared for surgery. That those would go without a hitch.
The planning and logistics of getting to Colorado and staying for 16 days. The surgeon wants me close to the hospital in case any complications arise because of the risk of healing.
Strength from God and endurance. My body is aching and my symptoms are growing. It’s very daunting and there’s going to be a lot to push through and I’m weary.
For my family-going through multiple brain surgeries gets harder, not easier and it is traumatic for all of us.
Support. This is a lot to pull together in two weeks. If you can support in anyway please reach out to me and I can send you my Venmo or Zelle.
I’m so grateful for all of your continued prayers and support as I’m climbing this next mountain, or never ending mountain. Even though we don’t always understand His ways and sometimes the prayers are not answered in the ways we want, He is still walking with us and holds us close in His love.
God Bless,
Shae
Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
It’s hard for me to write this because I’m having to accept and acknowledge that a third brain surgery is rushing at me like a freight train. I wanted to wait until I had more answers.
I have been struggling with migraine/head pain, nausea, blurry vision, worsening balance, etc for over two months now. The pain dramatically drops when I lay down flat, but doesn’t go completely away.
I’ve been to the ER 4 times now for pain relief. A CT showed a pseudomeningocele (collection of fluid) on the surgical site. My primary care doctor ordered a series of MRIs with and without contrast for follow up along with a CINE motion study (CSF flow- the fluid moving around my brain and spinal column).
The MRIs show that there is a fluid collection on my surgical site. I reached out to my neurosurgeon in CO and mailed him my MRI scans. He called me this week and wants to see me in person. I got an appointment with him in the first week of August. I’m also on the cancellation list so I could get in sooner.
There’s a leak somewhere in my dura (lining around the brain that was patched) that is causing this collection of fluid and it probably needs a surgical repair meaning a third brain surgery.
I met with my primary care yesterday to come up with a pain management plan until I meet with the surgeon. He put a referral in for the infusion clinic again (getting hydration and migraine medication). I’ve stopped all of my physical therapy for now until I’m cleared to go back.
This waiting period is so hard. I just want to know what is happening and I’m having to wait for answers and waiting for the outcome.
Thank you for your continued prayers on this very long journey. 💜
Shae
“God is our refuge and strength, an ever-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 its waters roar and foam and the mountains quake with their surging.”
Hello everyone! This post is going to be a little different. I don’t have any big health updates or huge prayer requests. Many people ask me how I am and how I am really doing. That is a hard question for me to answer. I usually reply, “I’m fine” to keep it simple. Recently, I’ve begun to reflect on why it is so hard to answer that question.
I started this blog to post group updates to save time. Then I caught a glimpse of the dark chronic illness world, on social media, and decided to also use this blog to bring some hope to others who are struggling with chronic health problems. As I’ve shared my health struggles and some of the fallout from my diagnosis, I’ve tried to keep it in a somewhat positive light. While sincere, that is only part of my story.
Here’s my honest answer for, “how are you? These are some of my late night thoughts that loop in my head.
There is a heavy grief I carry around with me: the grief of the diagnosis, the grief of brain surgery, and the grief of exile. The hope of life being “normal” followed by the disappointment of a failed brain surgery, more complications, and then a second brain surgery with its continuing fallout. The grief has been hitting me hard. I’m sad for the life I lost and the future that will never be, I’m angry over that loss and I’m angry that I feel so off kilter.
After my first surgery, I started therapy to talk through the trauma of the diagnosis and surgery. I learned that when someone is faced with a heavy medical diagnosis they go through the same stages of grief they would if someone died. Denial, anger, bargaining, depression, and acceptance.
Denial That gut wrenching feeling of shock. Not being able to wrap your head around it. Pretending it’s not there or not that bad and trying to convince yourself there’s an easy fix or maybe pretend it doesn’t exist.
Anger: I felt a little angry in the beginning, but I think I was in shock until I was wheeled into the operating room. Initially I felt like the rug had been pulled out from under me. But I’ve been feeling the anger more. I was told I would return to college and work after four months. I’m still waiting. It’s been four years and the path back is still not clear. So many “whys?” “Why is this going on so long?” When I had my second surgery the question was, “why do I have to go through this again?” “When do I get my life back?” I felt and still do feel anger at the medical establishment for how slowly things move and things getting missed. I am frustrated with the slow healing and my body that seems to have a will separate from my own. Wrestling with God’s timing being so different from my own. Deep in the late nights when my insomnia won’t let me sleep, all the questions, fears, and doubts come to a boiling point and I feel like I’m about to be crushed under the weight of it all. Why has this gone on so long? Where is the healing? Why are there so many unanswered prayers?
Bargaining I’ve definitely had my fair share of “I’ll do anything” and countless prayers of pleading “what ifs?” or “if only.” I could do so much more if I wasn’t sick.
Depression This one is a little tricky for me. This was my initial diagnosis when the doctors didn’t know what was happening so just threw that label on me. This one is harder for me to acknowledge, but come on, I’ve had two brain surgeries, it’s there.
Acceptance There are times when I feel like I’ve accepted this whole thing and I feel a sense of peace. This is my life now and I am establishing how to cope and live with it. I see all the blessings in my life and how the Lord has carried me through all these trials.
Something I’ve learned about grieving is that you don’t always go through the stages in order. Or you can work through one stage and feel like you have moved past it only to cycle through them all again. You will run through the cycle multiple times.
Before my second surgery and before I knew the first one failed, my therapist told me that I hadn’t allowed myself to lament. That I needed to let myself feel the grief. She encouraged me to do what King David did and call to mind all the good things and the ways God has been good to me. The prophet Jeremiah also did this in the book of Lamentations 3:19-23,
“I remember my afflictions and my wondering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet, this I call to mind and therefore I have hope: Because of the LORD’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.
It’s hard for me to admit the struggle and the internal battle because I don’t want to drown in negativity and bitterness. That would be a pretty easy ocean to drift in. There are times where my faith is tested and times where I feel so weary that I feel I have nothing left in me. There’s a part of me I recognize as sometimes fronting it, that denial stage, and I just want everything to be what it was and “normal.” Then there are the moments of anger, when I feel the world moving on without me.
I read a quote recently from C.S. Lewis,
“I sat with my anger long enough, until she told me her real name was grief.“
That was the lightbulb moment where I realized that this restlessness that I can’t quite put my finger on is grief. Grief over my diagnosis, multiple brain surgeries, endless recovery, all the fall out in my close relationships and grieving the life I lost to this illness.
But I’ve also learned the Bible is a book of suffering. Oftentimes, we tend to focus more on the victory we have in Christ and the celebration and neglect the parts of suffering. Jesus himself was described as a man of sorrows acquainted with the deepest of grief. He cried out on the cross in his final moment,
“My God, My God, why have you forsaken me?” (Mark 15:35)
I’ve begun to try and model some of my journal entries like David’s laments in the book of Psalms. To bring my troubles and anguish to God. All of it. The hurt, the anger and sorrow, and then to write about what I know to be true of the Lord’s character. The tender mercies in my life. I’m definitely struggling. Adjusting my view on how my life would go and changing my expectations. My schedule stays the same each week. Four days of physical therapy plus any additional scans or appointments. Then the rest of the week I am at home resting and managing my symptoms as they come and physically recovering from my PT workouts. I can feel pretty isolated and cut off from the “rest of the world.” I feel lonely and I struggle with wanting to do more, but still being limited by my symptoms. Sometimes, everything just feels monotonous, even my prayers. It’s hard to admit that.
I realized I can’t keep waiting for some big shift or change to happen in my life. I feel like I’m always waiting for something barely in the distance that I can’t quite see that will change my life. I guess I’m starting to work towards the “acceptance” part. So, perhaps that is a prayer request.
Recently, I went to a concert and did my usual concert preparations by googling all the artists and listening to their music. I found a song that hit so close to my heart that I had to pause it and breathe. It beautifully and hauntingly articulates the sorrow and grief of loss. The struggle of believing, but lamenting the loss. The song is called, “Nowhere to Be Found,” by Australian Christian singer/songwriter Nathan Tasker. After the concert we were able to meet Nathan Tasker and talk with him about his song and the impact its made on me and my family.
I took a fall with no safety net I felt my face hit the ground After a second to catch my breath I felt you kick me when I was down
Losing a loved one is hard enough Three pushed it over the edge So I carried the footprints of my daughter and son To the place where they say you live
But you were nowhere to be found Nowhere to be found
When the long line of dinners came to an end We made a meal of our own Out of cold habit we both bowed our heads And felt the silence of our home
Where you were nowhere to be found Nowhere to be found Nowhere to be found
Am I not shouting loud enough? Is there more than the top of my lungs? Oh I used to feel your love Where has it gone? Nowhere to be found
Now I look at the world like a crystal ball Usually from the outside in I see people I love get the life that I lost And I try to be happy for them But it feels like a town unacquainted with grief Protected like a child in the womb Oh but looking for you hanging around on those streets Is like looking in your tomb
Where you were nowhere to be found Nowhere to be found Nowhere to be found Nowhere
This song says everything I can’t. The parts of my grief that I am still processing and don’t have the words to describe. The doubts of where is God in all of this? The pain of watching those you love move on while you feel stuck and hollow. I love the part of feeling like you’re in a town acquainted with grief and the comparison of how looking for Jesus there is like looking in His tomb, where He was nowhere to be found.
There’s still an empty tomb and there’s still joy and new mercies that come in the morning. That is the pattern of lament. You address God, issue a complaint, a request, and then an expression of praise or trust in Him. We pour out our hearts – all our grief, anger, and sadness- to our God who listens and cares. We turn to him in our sorrow and then conclude with the hope of what we know is true of Him and His character. Lament turns us towards God while our grief and sorrow tries to pull us away. But, we know that God loves us and this life and its troubles are not the end for us.
Hello friends! I have a HUGE development and potentially a chance at a major reduction of symptoms and a huge improvement in my quality of life.
I’m sorry for the delayed update. For a while everything was just the same. There wasn’t anything new to report. I was in and out of the hospital a bit and on and off bed rest. I didn’t want to share all of the negatives. But, no big developments…until recently. Now I am totally off bed rest and working on clear goals.
This is going to be a story.
Bear with me, because of my storytelling skills and it gets a little dense…
Back in the summer of 2020, before my diagnosis of Chiari Malformation and then brain surgery, the first thing my primary care suspected was a condition called POTS.
From the Cleveland Clinic:
“Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart to beat faster than normal when you transition from sitting or lying down to standing up. It’s a type of orthostatic intolerance.
Each word of “postural orthostatic tachycardia syndrome” has a meaning:
Postural: Related to the position of your body. Orthostatic: Related to standing upright. Tachycardia: A heart rate over 100 beats per minute. Syndrome: A group of symptoms that happen together.”
“When we stand, gravity pulls more blood into the lower half of the body. In a healthy person, to ensure that a sufficient amount of blood reaches the brain, the body activates several nervous system responses. One such response is releasing hormones that help tighten blood vessels and cause a modest increase in heart rate. This leads to better blood flow to the heart and brain. Once the brain is receiving enough blood and oxygen, these nervous system responses settle back to normal.
In people with POTS, for unclear reasons that may differ from person to person, the blood vessels don’t respond efficiently to the signal to tighten. As a result, the longer you are upright, the more blood pools in the lower half of your body. This leads to not enough blood returning to the brain, which can be felt as lightheadedness (faintness), brain fog and fatigue. As the nervous system continues to release epinephrine and norepinephrine to tighten the blood vessels, the heart rate increases further. This may cause shakiness, forceful or skipped heartbeats, and chest pain.”
I had many symptoms at the time, but it only addressed about 40-50% of my full symptom list. That was enough for my doctor to want me to be aware of it. Then I went off to school, got diagnosed with Chiari, moved back home and had surgery. So in my mind POTS was off the table and not something I thought about very often because many of the symptoms overlap with Chiari. I have so many commodities, it’s impossible to pinpoint each symptom to the cause.
Since the second brain surgery in January 2024, I’ve been hit hard with lots of escalating symptoms. For example, when I stand my vision goes completely black and I feel very faint and will have to sit down or lie on the floor. It’ll happen even if I’m lying down and just shift to a sitting position. I’ve not been able to eat much, been very sound and light sensitive, my skin and eyes have been really dry, my bp is low, I am short of breath when I am not doing anything, and lots of brain fog and fatigue.
A few weeks ago I met with a pain doctor (my request, I was so desperate for relief and thought they could help with medical massages or things like that) and it went as bad as it possibly could. He told me it was a psychological problem and that I probably didn’t need the first surgery to begin with. He focused on the notes from the initial neurosurgeon in Seattle who wouldn’t do the surgery and told me not to get a second opinion. He didn’t seem to be very familiar with Chiari, so he talked about anything but Chiari.
When this pain doctor first walked into the room, he made some “jokes” that just didn’t sit right with me. About how thick my file was for someone so young and how confusing it was…hahaha. He said he was confused, so I must be too. Then he said that my problem is because of the syrinx (a fluid collection, like a cyst) in my spine and the patch in the lining around my brain is probably leaking and that I probably need a blood patch. If that’s the cause my symptoms would be different and I would probably need another brain surgery. Now, for those with Chiari and who have had brain/neck surgery you don’t want to mess with your spine like that without good reason and clear evidence. I’ve become very cautious with doctors who just want to poke and prod and throw a diagnosis at the wall to see if it sticks or to save time.
He also did an assessment and said I meet the criteria for EDS (Elhers Danlos Syndrome), but that no insurance would pay for a diagnosis. I’m not sure what “pay for a diagnosis” even means. EDS is something that comes up a lot. There is definitely is a crossover with Chiari Malformation and some of my other comorbidities, but I don’t meet all the criteria. The evaluation the doctor was using was an outdated and incorrect method of testing. I am very hypermobile and fit those boxes, but you can be hypermobile without having EDS. He also saw my referral for genetic testing and told me that there was no way I would qualify for that and that if I wanted to buy a diagnosis then it would need to be out of pocket. I felt completely misunderstood. I am trying to get diagnoses removed and looking for clarity, not to add anything.
I am not going back to him.
That same week I met with a geneticist who he took my history, reviewed my symptoms and decided I qualified for genetic testing. He also initiated an EDS assessment, but didn’t think I met the criteria for EDS. He said there are other types of hyper mobility conditions.
There are four ways the genetics test can go:
Nothing comes back.
One or more gene mutations.
A gene is flagged as a mutation, but there’s not any information on it and it’s unclear if it’s symptom causing.
Nothing comes back now, but as science keeps progressing and evolving something could be flagged in the future. It’s more for information gathering at this point for the future.
There are still so many unknown genes and information surrounding genetic testing.
Later that week I was sharing with a friend, who has POTS, what happened. She told me about Western States University and their POTS clinic, she shared they had really helped her get her POTS symptoms under control. She suggested we call right then and see about getting an evaluation appointment. This was on a Friday and I got in on the following Tuesday. I was stunned at how quick I was able to schedule an appointment.
We were there for five hours for the assessment. It began with a very thorough medical history, a neurocognitive assessment, a neurological assessment, an EDS assessment, and then a NASA Lean Test. One of the issues I’ve been having is getting a formal POTS diagnosis, because there is no one my primary doctor knew of in our area doing a tilt table test, which is what it sounds like and is the common diagnostic tool. There is a doctor at OHSU, but her waitlist is seven years long. The NASA test is a version of the tilt table test that NASA developed because for some reason all astronauts have come back from space with POTS. The NASA test is over 50 years old.
For the NASA test I wore a heart monitor and laid in a dark room with no talking or noise for 15 mins so that we could get a baseline of my heart rate, 66 beats per minute (bpm). Then I leaned against the wall with just my shoulders touching and my feet about a foot from the wall. Over the next eight minutes, while I stood there quietly and without moving, my heart rate jumped up an additional 76 bpm to 142 bpm and continued climbing. I couldn’t feel my heart rate climb, I just felt a little nausea and some mild dizziness.
I was not feeling very “symptomatic” that day, it was actually my best day in weeks and I was worried the testing would not capture whatever was happening to me. That was not the case. 😂 They cut the test two minutes early and instructed me to lay on the table so my heart rate could come down to normal. Then I was led to a room to talk with Dr. Bill Moreau.
Dr. Moreau did something that no other doctor has done before. He told me he was going to tell my story back to me from what he understood and he wanted me to correct him where he was wrong. He began from when I first started getting symptoms at 15 and went all the way up to now. He had the full picture and understanding that no other doctor I have met with has been able to grasp and understand. I was floored by his insights into the different phenomena I’ve experienced with my body. He explained things to me that I had even stopped bringing up to doctors because they just kind of stare at me and move on.
The reason why he understands so much is because he is a researcher and Sports Medicine doctor who runs a Concussion Clinic. He was part of the NFL International Think Tank on Concussion Research that changed the way concussions are treated. He was also the Vice President of Sports Medicine at the United States Olympic Committee for ten years.
Brain surgery (surprisingly…) counts as a brain injury (mild traumatic brain injury)(mTBI) )along with the actual compression of my brain for who knows how long. It honestly seems like such a simple solution and kind of obvious to be treated as having a brain injury, but for some reason that hasn’t been the case. I have no idea why no one has approached my case through a brain injury lens, but it makes sense and it has opened a whole new world of recovery to me. It is a huge answer to prayer.
Dr. Moreau diagnosed me with Dysautonomia, POTS is a branch of that. Some people develop Dysautonomia after a brain injury. 1 in 5000 people have it. He explained that research on it is moving from the fringe of science towards the middle because so many people have developed it as a result of Long Covid. He told me it is not in my head and that the symptoms they are measuring are things like my heart rate that I have no control over. He said it is impossible for me to make my heart rate jump like that. I know that, but it felt really good to hear it from a doctor. He shared that he isn’t going to be going off of my feelings, he is going to be working with measurable criteria. He used a computer analogy. He said that my processor and memory are working, but the CPU is broken. They will help my brain rebuild the pathways between the two.
Dysautonomia is the missing piece that contains a reason for all of the random symptoms I have been experiencing that my doctors have been struggling to understand. This chart captures most of it, it is just missing sleep.
“Dysautonomia is a nervous system disorder that disrupts autonomic body processes. These are automatic functions like your blood pressure and heart rate. Having dysautonomia means these functions don’t work properly, causing disruptive symptoms. These symptoms are often manageable, but diagnosing and treating dysautonomia is sometimes difficult.”
He also asked me to be part of a POTS study to show the need for active interventions (PT) so your brain can heal. I agreed. The idea is to create new neural pathways and to teach my brain how to not freak out when I move.
So, I’ve started this protocol where I go twice a week. My calves are wrapped with 6″ ace bandages for compression and I wear a heart monitor. I work one on one with a resident who leads me through a series of exercises for 60-90 minutes. The first two weeks are supposed to be the hardest as your body adjusts and your brain is pushed.
The other big thing the doctor recommended is getting prism glasses. He could tell by looking at my eyes that they weren’t aligning correctly. He explained that if we were sitting side by side with our eyes closed we are both running at 100 horse power. When we open our eyes, I lose 40 horse power as my brain tries to compensate for the misalignment.
He referred me to Dr. Elizabeth Powers, a neuro ophthalmologist who specializes in helping people with brain injuries. I met with her and she again did a detailed history and a lot of testing. She explained that the Dysautonomia is causing my body to be stuck in fight or flight, so we have to work on calming my body down. I started wearing the prism glasses a few days ago. They are tinted a mango orange and I wear them over my contacts. Glasses with an orange tint block out blue light, which helps our bodies’ circadian rhythms get back on track easier and should help improve my sleep. I am still getting used to them because they are physically retraining my brain to see in a different way. I should notice a difference in 3-4 weeks.
Dr. Powers also recommended blue light therapy for my eyes. She said that it will help to reset the biochemistry of my brain. It helps to reduce daytime drowsiness, brain fog and should help me sleep better. I am scheduled to start that next month.
I’m also still working with an Occupational Therapist, who is helping me with things like time management. We made a binder where I can visually see the days and my activities with places for notes. We’re putting together a tool box too with things like grips for helping me hold my pens and various ear plugs to help with sound sensitivity.
I’m still doing physical therapy for balance and mobility with the physical therapist who I’ve been working with for almost three years now. She is amazing and has been a key part of my team on this journey. There is also speech therapy and strain counter-strain therapy to help with overall pain relief.
There are still many symptoms I’m struggling with and some days are better than others, but I’m learning to manage it. I’ve made a bag I carry with me filled with ice packs, ear plugs, electrolytes, vomit bags, ginger drops, and anything else that might help me when I’m out and about, going to appointments and trying to live my life.
The hope is this clinic will be able to help me. I should know in two to three months if my body is responding or not. If I am a “responder,” then I will continue with the Moreau Protocol for the next 1-2 years. There are no guarantees, but hope that I will eventually be able to drive again and go back to school.
Prayer points:
Endurance I’m feeling exhausted. This protocol is a lot of work and I’m tired. I’m in my second week now and some days my symptoms and head pressure are bad and I lay down with an ice cap on my head. I also go to the other therapies, so next week there are five appointments.
Response Please pray that my body responds to this therapy and that I can enter into the long term treatment phase.
Hope It’s still a lot to process and I feel excited, but also a little bit of some “tempered hope” as it was said to me. I’m trying really hard to keep going and to be hopeful but at the same time there’s a part of me that doesn’t want to hope too much. I don’t want to get my hopes up too high like I did for my first surgery. It’s mentally exhausting.
Trust Going back to looking at the way I ended up at the clinic and how fast I got in with them and then quickly in with the neuro optometrist and I’ve already received the glasses two weeks earlier than expected, it’s clear God has a hand in this.
My mom took me to see one of my favorite bands, Cain and they sang a new song called, “Wings.” I thought it was funny because when you look up POTS and Dysautonomia memes there’s sayings about being “allergic to gravity.” “Wings” is a new song about feeling heavy and having troubled times always trying to bring you down. Then about how we’re gonna fly with wings like eagles because “gravity” has no grip and then to soar to new horizons.
Thank you all so much for your continued prayers and support. This is a long journey and I am glad I am not doing it alone.
God bless,
Shae
This is my song for this next season.
"Wings" by Cain
“Heavy days, heavy heart, got that heavy burden Weighing on my shoulders now Troubled times, troubled mind, got that troubled feeling Always tries to bring me down
The world can wait 'cause I'm gonna wait on You I feel my spirit lifting when I do
I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Gravity ain't got no grip on me 'Cause I've got wings Oh, you know I've got wings, yeah Oh woah
I might be down here, feet stuck on the ground here But You keep my head above the clouds All of the problems, way too big to solve 'em Are so much smaller looking down 'Cause only You can change my point of view I feel my spirit lifting when You do Oh-oh I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Gravity ain't got no grip on me 'Cause I've got wings
Yeah, I've got wings Oh woah Mmm
Here we go
I feel the roof coming off of this place Coming off of this place I feel your spirit renewing my strength Yes, Lord I can hear heaven is calling my name Yeah, yeah
And I feel the roof coming off of this place, yeah And I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Hey Gravity ain't got no grip on me Oh yeah, oh yeah 'Cause I've got wings
Huge answer to prayer this weekend! Thank you to everyone who has been holding me and this appointment with my neurosurgeon in your prayers.
The MRIs of my brain look good. My surgeon explained that the fluid pockets the ER was freaking out about is a surgical glue he used as another sort of seal. This glue is supposed to dissolve over time and he believes that’s what the collection of fluid is and is not overly concerned about it.
The feeling of the ball in the back of my head and the extreme pain in my head and scalp is from the Occipital nerve. He had to spread my muscles apart during surgery and the nerve was compressed and is still inflamed. He said full healing is going to take about a year. Nerves are slow to heal.
The treatment plan for this is a nerve blocking pain injection. Hopefully, my neurologist can do that in his office.
The full MRI of my spine showed several areas of Degenerative Disc Disease in my neck and lower back. We are going to just monitor the neck for right now, but I will start getting injections in my lower back that should help with my back pain.
I feel really good with this appointment and this plan of care. It’s heartbreaking having an illness and chronic pain that’ll be there for the long run, but I feel settled a bit knowing there’s a good plan in a place and with the relationship with my surgeon. He was awesome.
I had a hard time getting phone calls returned from his office a few weeks ago and shared my frustration. Turns out there was a problem with their phone system, but they are also adding a “Chiari” option to their phone tree that will be checked multiple times a day for messages from Chiari patients. I appreciate their responsiveness. I just got caught in the craziness of switching systems.
Going forward, I feel like we have a good plan in place. I will continue to work with multiple physical therapists for different therapies and really work on gaining strength and balance. He also mentioned treating my fibromyalgia more aggressively and said a pain management doctor can help do that along with the injections in my lower back for the Degenerative Disc Disease.
We are going to do another MRI in 9 months and come back to Colorado for a one year follow up. I’m definitely feeling more encouraged with this last appointment.
We also had a trip home with Angel Flight West! It was a smooth flight on a very cool jet! The pilot was so kind to donate his time and plane.
Huge answer to prayer this weekend! Thank you to everyone who has been holding me and this appointment with my neurosurgeon in your prayers.
The MRIs of my brain look good. My surgeon explained that the fluid pockets the ER was freaking out about is a surgical glue he used as another sort of seal. This glue is supposed to dissolve over time and he believes that’s what the collection of fluid is and is not overly concerned about it.
The feeling of the ball in the back of my head and the extreme pain in my head and scalp is from the Occipital nerve. He had to spread my muscles apart during surgery and the nerve was compressed and is still inflamed. He said full healing is going to take about a year. Nerves are slow to heal.
The treatment plan for this is a nerve blocking pain injection. Hopefully, my neurologist can do that in his office.
The full MRI of my spine showed several areas of Degenerative Disc Disease in my neck and lower back. We are going to just monitor the neck for right now, but I will start getting injections in my lower back that should help with my back pain.
I feel really good with this appointment and this plan of care. It’s heartbreaking having an illness and chronic pain that’ll be there for the long run, but I feel settled a bit knowing there’s a good plan in a place and with the relationship with my surgeon. He was awesome.
I had a hard time getting phone calls returned from his office a few weeks ago and shared my frustration. Turns out there was a problem with their phone system, but they are also adding a “Chiari” option to their phone tree that will be checked multiple times a day for messages from Chiari patients. I appreciate their responsiveness. I just got caught in the craziness of switching systems.
Going forward, I feel like we have a good plan in place. I will continue to work with multiple physical therapists for different therapies and really work on gaining strength and balance. He also mentioned treating my fibromyalgia more aggressively and said a pain management doctor can help do that along with the injections in my lower back for the Degenerative Disc Disease.
We are going to do another MRI in 9 months and come back to Colorado for a one year follow up. I’m definitely feeling more encouraged with this last appointment.
We also had a trip home with Angel Flight West! It was a smooth flight on a very cool jet! The pilot was so kind to donate his time and plane.
Weathering Chiari 