Pseudomeningocele

Two Months Post-Op: Prayers, Delays, and The Surgeon’s Good News

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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.

Back To Colorado

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Sweet Pemberley

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.”  

~ John Piper

God Bless you,

Shae

Third Brain Surgery & Neck Fusion Completed.

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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.”

– Psalm 28:7

Pre-Op Update

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Driving to CA for the specialized scans before surgery, next week.

During my post-op I had some bloodwork done. I received the results the following day, which shows that my liver is damaged. 

I called my doctor, but he was out of the office and I spoke with an on call doctor who doesn’t know me. 

Before the second surgery I hardly took any medication, now I take quite a bit. I don’t drink any alcohol because of how it will interact with my medications. One is a beta blocker for my heart rate. This doctor told me to stop drinking and I would be fine. The more I tried to explain I don’t drink, the more unconvinced he was. I felt like I was a cliché character who is committed in an asylum and tells everyone, “I’m not crazy!”

I decided to just wait till my doctor got back to the office. When he did he said he thinks it could be the medication I take for seizures.  I’m already weaning off of that for surgery. I also take a headache medication that could be contributing. But, when we talked to the pharmacist, she said I’m on such a low dose of both that she doesn’t think it’s the medication causing it at all. 

My doctor says it’s not enough to disqualify me from surgery, but once I’m through the woods with surgery I’m going to need to follow up on it and we are going to keep a close eye. It could just be my body under intense pressure and stress. 

Please pray for healing for my liver as we don’t know what’s going on with that.💜

Thank you,

Shae

Last Minute Travel For Specialized Scans

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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.

3rd Brain Surgery Support

May God Bless you,

Shae 💜

Third Times a Charm

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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.
~ Psalm 23:4

Stir Crazy

weatheringchiari1 Comment

Here is some of the nitty gritty of my recovery-

These last few weeks of my life have been so hard. I’m bed bound most of the time and even with the pain meds I’m still feeling a lot of pain. I’m mostly lying in bed. Isla moved out of her room so I could be on the first floor and not have to confront the stairs. I keep falling and I’m relying on my cane.

My mom got me some sketch supplies and watercolors cause I was going crazy just laying in bed. I got a lap desk off of amazon that’s adjustable, so I don’t have to look down.

I am not supposed to move my head and neck much. I can do small “princess nods”, but I can’t see the floor when I walk or twist my neck and body. Using the cane has been so helpful with my balance and fatigue.

I’ve been out of the house a few times for medical appointments and once for a dinner. I go on car rides to the store or pharmacy and wait in the car, just to get out of the house. It takes a lot out of me.

My fatigue is high and my energy is very low. I have a hard time standing for too long. Sometime, my head gets heavy and I need to lay it down or my vision goes black and I feel like I’m about to faint. I’m supposed to take it easy, but still walk a little. As soon as I start moving, the pain and symptoms definitely get worse.

My insomnia is worse than ever. It takes forever to find a comfortable position to sleep with pressure on my neck and head. I’m constantly waking up to adjust the pillows and blankets, get ice packs and take my pain meds. I’ve also been having a lot of nightmares that are making it harder.

Isla comes and sits with me, but she always makes me laugh so hard I’m scared I’m gonna tear some stitches.

We’re home now and made it through surgery, but in a lot of ways we are still in the thick of it.

I’ve had several doctor’s appointments and there’s been a ton of pharmacy runs.

The insurance is pushing back a lot on some of my medications.

Over the weekend, there was a mess up with the prescriptions and we thought we had more refills than we did. The bottle had multiple refills written on it but the pharmacy, said there system can’t process that.

I had to call my doctor and because it was the weekend they said that it would be better for me to just go to the ER than go through the on call doctor. Which we did. They gave me just enough to get to Monday to talk with my doctor.

My doctor did everything he could on his end, and it got sent to insurance who is denying it.

We are all stuck in this cycle of it goes to my doctor, to the pharmacy, then to insurance and the back again. Please pray that this all gets sorted out.

Just a few more weeks and I’ll be through the worst of it and on to the next chapter of healing and working with a physical therapist. I also be able to wash my hair with something other than baby shampoo.

Thanks for all the messages and checking in with me. Sometimes it takes me awhile to respond, but it really does encourage me. 💜

Shae

Come What May

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I love concerts, the planning and anticipation. Going to events is different for me now. I have to time it and plan for days of rest before and after the event. At a concert, I am trying to be fully present in the moment, but at the same time tuned into my symptoms and trying to manage them, so I can be there. I have polaroid sunglasses that my physical therapist recommended I wear, even indoors, to help with overstimulation. Often, I have to leave and find a quiet place to take a break. 

Isla and my mom are my music buddies. We always share new music and talk through everything about the songs. One of our favorite bands is We Are Messengers. We’ve seen them in concert several times and love them. Their songs were on my playlist I listened to in the hospital after my first brain surgery. 

They came to Oregon back in October, so Isla and did some dog sitting to get tickets. 

The week before the concert was when the first MRI came back with the findings of a fluid collection. I was scheduled for a neurosurgery appointment, but still had to wait a few weeks. I was already feeling very sick at that point and could tell my physical symptoms were getting worse. 

I was disappointed that I felt so sad and heavy during this concert that we had all been waiting for. I don’t go to many big events like that, so it was a big deal. A lot of planning of symptom management and coping went into this. My doctor says it’s good for me to have an event or something to look forward to that will help keep my mind occupied. 

 I was so upset that to have this MRI  hanging over me the whole night. I always have this feeling of wanting to be fully present and not miss anything, but I feel like I’m always able to be fully in the moment. I think that comes from losing and missing out on so much because of my illness. 

It was an amazing concert and we had so much fun. There were a few times I had to sit down and close my eyes. I popped an instant ice bag on the back of my neck to help calm some symptoms that helped. They played one of my favorite songs, Come What May.  But standing up and singing “come what may” while you’re waiting on an appointment with a neurosurgeon to discuss a collection of fluid in your brain, was easily the scariest moment I have ever experienced in worship. 

I couldn’t sing it and I felt so angry. Angry with my life, for the life I lost, the life I have with this illness and how unclear and scary the future seemed. This is not the life I ever imagined for myself and there’s times I resent it. I resent my illness and the struggles it brings both physically and in relationships to with people who are close to me. It’s so isolating. 

I wrestled with God so much during that song. I think I was angry with Him too for how heavy everything felt and how I can never see a stopping point for this pain and struggle. Angry with how abandoned I felt. I was also angry at myself for not wanting to sing the phrase “come what may”. It was just too real and too scary. I kept thinking to myself can I do that sing that with sincerity and I am dreading my future. 

I remember pleading with God that I wanted nothing more coming my way and begging for a break and for some relief. To let things be calm for a little while so l could feel like I wasn’t constantly barely keeping my head above the water, about to go under any moment. 

I remember during this song feeling a heavy foreboding feeling sinking into me and I just knew something was wrong. Something was wrong with my body. I knew then the MRI scan was something more serious than I wanted it to be and that something was coming. In the middle of the song, I felt an overwhelming panic and despair, I dropped into my seat and wept. My mom and sister sat with me and we prayed together. 

On the way home we talked about the concert and that moment. I explained how that was one of my favorite songs, and my thoughts in that moment. It’s easy to sing songs like that when you feel far removed from trials, but it’s different when hardships they feel like they’re about to drop on you at any moment and crush you. 

Isla in the back seat quietly says, “it doesn’t change the meaning of the song. The truth is still the same.” She’s right of course, but I have struggled with that song ever since that night. It honestly made me feel angry and restless. I didn’t want to be confronted and think about the possibilities and questions it brought up. The big one was if my faith strong enough to be able to proudly and fiercely say to God, “come what may” knowing that I was probably up against another brain surgery and brutal recovery. 

I think I was feeling guilty for my faith feeling worn and lacking. I know that God is perfect in His love and would be faithful to me, but it all felt like too much. I didn’t want any more pain and suffering. I want my life before all of this illness back. 

A few weeks after that concert, is when I found out that the fluid collection is caused by a leak in my dura (the inside lining of your brain) and is still actively leaking and slightly growing. There’s scar tissue, and decreased CSF flow, which could be caused by the scaring or the fluid, possibly both. This is why I feel so sick and have developing mobility issues. I’m using a cane now. 

I heard “Come What May” on the radio a few days ago, right before we left home to fly to Colorado for surgery. My family was in the car, so we listened to it. 

This time though I heard it differently. The part of the song that I heard the loudest was “you’re still my rock, my hope remains, I rest in the arms of Jesus. Come what may.” The truth of that sank deep. 

He’s my rock in this time of suffering. There is nothing I can do to change this situation. I can’t stop the need for brain surgery or cure this incurable condition, and the changes and new symptoms, God does not change. God’s love and faithfulness to me has nothing to do with any of my abilities or lack of, it has nothing to do with my fears and the endless questions of what if’s. My hope is in Him and Him alone. He is the same on the mountain tops as he is in the valleys. 

We are now for CO for me to have my revision brain surgery TOMORROW. The surgery is to remove the fluid, scar tissue, and part of it is exploratory to see exactly where the leak is and what is going on and causing the blockage. 

Please pray for me.  Pray for my family. It’s not my first brain surgery, so we know in some ways what to expect, which is terrifying, but there is still so much unknown. I feel scared and dread for what’s coming, but also hopeful that this will be that last surgery and bring some physical healing and improve my quality of life. 

So, while this is not at all what I would have chosen for my life and I’m scared, and don’t know what the future holds. I can say that God is still good to me. I see his tender mercies and His love for me. 

Sometimes sorrow is the door to peace

Sometimes heartache is the gift I need

You’re faithful, faithful

In all things

In every high, in every low

On mountaintops, down broken roads

You’re still my rock, my hope remains

I’ll rest in the arms of Jesus

Come what may “

Thank you all for your continued support and faithful love and prayers.

Shae

TOMOROW IS THE DAY!!

weatheringchiariLeave a comment

The other GoFundMe had some problems, so my friends Amy Munoz and Heather Hartrim-Lowe have organized a new one. Tomorrow is the day i am having my second brain surgery! We barely made it out here to Denver, because of the weather, but we are here!

We appreciate all of your support, it’s taking a lot to be here and the expense of the surgery itself. They need me to stay out here for two weeks to make sure there are no complications. Then I will have a 10 day follow up appointment with them where they will remove my staples and do an evaluation to clear me for the flight home. I also need to come back to CO in two months for a follow up appointment.

I’m using a cane now because I have developed some mobility and balance issues. I’m losing the fine motor skills in my hands too and barely able to write with a pen. My ability to do math and keep track of time is gone right now, adding 2+5 is beyond me and time is confusing. There is short term memory loss also. The headaches are nonstop because of the fluid blockage in my brain. Hopefully, this surgery will heal and restore those things or at least stop the progression and will greatly improve my quality of life.

We would like to cover January 15, 2024 in prayer for Shae as she goes in for her 2nd brain surgery. Please join us in praying for Shae: every part of her procedure and recovery, the doctors and nurses, hospital staff, hospital, operating room, recovery room, and Shae’s family. Let us pray that in all things God’s will be done.

Shae had brain decompression surgery in March 2021 for a rare condition called Chiari Malformation (kee-AH-ree mal-for-MAY-shun) Type I. Since then, Shae has experienced complications, including a leak and scar tissue that is growing like a weed at the site of the previous surgery.

Last year Shae had over 135 medical appointments which does not include the ER and urgent care visits. There have also been dozens of trips to the pharmacy and calls to doctors and insurance, not to mention all of the scheduling. It’s overwhelming!

Shae is going to a specialist in Colorado who is familiar with this rare complication. Shae hasn’t been able to work or return to school and needs support for travel to Denver and upcoming medical bills.

Shae’s 2nd surgery is scheduled for January 15th, 2024. The goal of this surgery is to remove the scar tissue and replace the initial duraplasty (the outer covering of the brain). The hope is to stop the cerebral spinal fluid leak. In addition, exploratory surgery will look for additional complications. After surgery Shae will need to stay in Colorado for ten days. At her ten-day follow-up exam, the doctors will assess her recovery and remove the staples before releasing her for travel home. Shae will also need to go back to Colorado for a follow up in two months.

Please consider helping Shae and her family financially as they navigate this extraordinary medical journey.

https://www.gofundme.com/f/support-shaes-brain-surgery-and-recovery