surgery

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.

New Surgery Date With Neck Fusion

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It’s been a long few days. We were supposed to fly out yesterday, 8/22/25, to head to CO and I was supposed to have surgery on Monday, 8/25/25. However, the Upright MRI that we drove to San Jose for came back with some new findings that have changed and delayed the surgery. We were able to change all of our flights and are shifting all of our other arrangements. 

The Upright MRI shows that my upper cervical neck is instable and C2 is compressed, also when my skull and neck meet (CCJ-cranial cervical junction) is instable too. The surgeon read the scans and says my neck needs to be fused for stability. 

This all goes back to my first surgery and how under researched Chiari Malformation is and all the commodities that come with it and how they play into each other. My first surgery was in March of 2021, they removed C1 to create additional space (that was needed), but didn’t fuse it. Now, because of new research done in the last two years and released last month, we know I have hEDS and the surgery should’ve been done differently. They should’ve fused my neck the first time.

The instability in my neck is what led to Dysautonomia (POTS and all of my other automatic systems going offline). Post surgery, with a lot of physical therapy there is hope we can retrain my system to work out of much of that. 

The neck fusion just added on a whole lot more recovery and pain in this next surgery. But, hopefully now with the correct diagnosis and the updated research and studies I have a solid chance of recovery after this surgery. 

My neck is definitely getting worse. There’s now a spot on my upper neck near my scar where there a fluid pocket. It’s very tender. If I’m upright for a while it grows and it gets smaller if I am laying flat. I’m supposed to be resting and staying as flat as I can from now until the 8th now. 

My family and I appreciate all of your prayers and support. 💜

https://gofund.me/66093bc3

Thank you,

Shae

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

Here We Go Again???

weatheringchiari1 Comment

Friends,

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.” 

~ Psalms‬ ‭46‬:‭1‬-‭3‬ ‭

Good Follow Up

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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.

Thanks for all the prayers,

Shae 💜

Good Follow Up

weatheringchiariLeave a comment

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.

Thanks for all the prayers,

Shae 💜

Mummy in the Hallway

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I’ve been having horrible pain in my head. There is a sensation where it feels like I’m laying on a tennis ball. It’s on the back of my head and off to the right side. It’s been like that since surgery, but it’s been getting worse and making it harder to sleep. The pain started moving to the front of my head and my vision became distorted yesterday.

It was one of those situations I’m constantly finding myself in of where I’m trying to assess and analyze my body and decided if I need to go in to the hospital or not. I know that this is complicated and needs to be addressed by the neurosurgeon. I tried calling them several times over the last two weeks, but haven’t heard back.

Yesterday, my nausea and pain were so high. I went to the ER at OHSU just to be sure everything was “okay”.

My mom took me around 6pm last night and we got home this morning around 5am. I met with the resident who thoroughly went through my history and came up with a plan to do a “migraine cocktail” through an IV and to do some bloodwork and a CT scan.

After the IV was started and the CT scan was done they sent us back to the waiting room for a few hours and I tried to sleep in a wheelchair with an IV drip bag.

The room was full and really noisy. One person loudly read from the middle of his crazy book, with commentary, for all of us, whether we were interested or not.

I had been told to go to the desk when my saline was done. When my bag was still half full, a nurse unexpectedly came and took us back to the back. She said she needed to find me a bed so I can lay down and get some rest. Three other nurses met us in the back and all worked together to make up a bed in busy hallway and arrange everything around me to make me as comfortable as possible.

It was completely unnerving. My mom and I kept making big eyes at each other, over our masks (required at OHSU). We knew they must have seen something in the scan and we knew we had to just wait for the doctor to come back to talk to us.

The bed was a bed pushed against a wall between two rooms in the noisiest hallway.

They tucked me in with tons of blankets and a towel draped across my eyes and a mask. A nurse walked by and commented that, “a mummy haunts the halls.” To some that may look like torture, but the few hours of broken sleep in that hallway was some of the most restful sleep I’ve had in weeks.

One of the nurses who helped set me up, told me that if he just saw me and didn’t know my story he would think I wasn’t in serious pain, but knowing my medical history and surgeries he knew I was just being very stoic. My mom said that if my pain level is at 3 or 8 I look the same. He said he kind of admired it, but he was also concerned cause he thought if I was in pain or needed anything I wouldn’t show it or ask for help. I told him my primary doctor has told me that is a problem because I present like I’m feeling well when I’m struggling. The nurse told me to remember “the squeaky wheel gets the oil.”

Once I was set up, the doctor came and told me that there was a finding of a fluid pouch on the outside of my skull and another inside. I knew of one of them from when I was readmitted in CO, they did a scan and saw a seroma, which the surgeon said was normal after surgery.

The ER wanted to run some more tests and consult with the neurosurgery department. They had sent the CT scan to be read by two different radiologists and got “wildly different” readings on what they were showing. The ER wanted to admit me, but didn’t have enough information to do so.

The neurosurgeon came and ask some questions and wanted an MRI for more details.

I did the MRI around 2:30am and was brought back to the hallway. Then a Neurologist went over all my meds with me and tried to help me figure out what meds to take for what symptoms. She made a few adjustments and some new suggestions.

I was responding to the migraine cocktail, so they could treat the migraine and dehydration (from the nausea). They think there was a migraine layered on top of the surgery complications, and I’m still healing.

We came up with a new at home rescue plan and prevention plan specifically for migraines to try as a first line of defense, until I meet with my neurologist. The migraine meds weren’t working before surgery, so we’re trying them again to see if they’re more effective now, after surgery.

We waited a few more hours for the MRI report, but OHSU computers and system was down for updates. They could read the report from the radiologist, but couldn’t access the scan. They think it showed the two pockets of fluid, they one on the outside, the seroma, may actually be smaller than in CO, they just couldn’t confirm it. So if that’s true, that’s good news!

Still not sure about the other one, inside my skull, though. They said to follow up with CO about it because my “anomaly is unique”. They think that the extra fluid is causing the extra pressure and pain. Their immediate concern was if there was a CSF leak that would require immediate intervention.

The neuro team came back to the doctor and said they thought it was a surgical issue and to follow up with CO. The doctor said if the MRI report was reread they would call us, but I was able to go home.

We spoke with the surgeon’s office in CO this morning. We are going to send a disk of the scan to them so the surgeon can compare it with the scans from their hospital.

So my next steps are following up with neurosurgery at OHSU, my neurologist, and my primary. Then returning to CO in April for my follow up with the team there.

Overall, it was a really positive ER experience. I have not been to the ER at OHSU before and I felt very cared for there.

A friend texted me while we were pulling into OHSU and asked how I was doing. She got a prayer chain going for me and two families showed up at our house with food today. We really needed and are grateful for the friends and family that rally around us. 💜

God bless,

Shae

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

Home & Recovering

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I’m home now since Thursday night. Thank you all for the constant prayers and the steady support and love.

I’m exhausted and have been sleeping most of the days away. My body physically feels worn. It’s hard to move, but I’m making myself go up a flight of stairs and just want to walk around. Some days are easier than others. If I lay still with an ice pack and some meds I can manage. It’s the moving around part that’s hard.

Isla has been so gracious and is letting me sleep in her room in the lowest level of the house, my room is on the highest floor. Which freaked out everyone (including the medical team).

A few family and friends have briefly stopped by, but I am mostly sleeping. I don’t actually remember all the details of my first surgery, but I really don’t remember sleeping like this.

I have to wash my hair and
incision every day with this baby wash type thing. One of the nurses told me to be prepared that I am going to lose some hair in the coming months from the medication and my body being under stress. That happened last time, so I’m ready for that. I already cut my hair shorter so it’s easier to manage and grow out.

I saw my primary care doctor yesterday. My incision is a little swollen, but we’ll just watch it for now.

I made a playlist of everyone’s suggestions and I play it all through the night. It’s very eclectic and lots of it is new to me and gives me lots to think about.

God Bless,

Shae 💜

Readmitted

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Sorry for the late explanation. I needed some time to calm down, restart and get and travel home.

Very long complex story, but I was readmitted because i had not had a bowl movement since before surgery. They released me before that happened saying it would at home. It never did. We called and they said if it was painful to go in, which is was so we did. We thought it would be something they took care of in the ER and we would be out that night. They came back in and said because of all the stitching neurosurgery wanted me readmitted for observation.

So, I was readmitted a scans showed a Seroma (fluid collection at the surgery site) that the ER was concerned about. The surgeon later told me that it’s very common and they would be surprised not to have one. That the ER always makes a big deal out of it.

During my 23 hour stay, I was not fed or given any fluids through an IV or a cup of water. Whenever I hit the call light button it was ignored. The doctor came in for around 3 mins and said all my problems were because I have an addiction to pain meds. (The one I just started taking after brain surgery on Monday). The only thing this doctor did was cancel ALL my meds for 10 hours. I went without pain meds other than Tylenol. There were a few medications the nurses even told me that had no idea what those were for and I had to explain how during brain surgery they stopped my CSF flow and I lost of CSF fluid so they filled me back up with saline and it takes time for the to become CSF, so that medication they stopped was to prevent the headaches that go with that. I asked for my meds several times and was always told to just wait for them to ask the doctor. They also asked the doctor if I could have a small bowl of oatmeal and an IV for hydration. They finally came back and said they could see the doctor was reading their messages, but not responding. They said we could fire her and get a new doctor, so I formally said that’s what I wanted to do. Another couple hours and they come back to say, I can’t fire her because she is the only doctor working that floor right now. They also let it slip that the doctor had also gone to empathy training before.

It gets to be a whole mess of meds being ordered and then canceled “this” is gonna happen but nothing does. I am in so much physical pain, starving, dehydrated and I don’t feel safe. I could write a whole post on medical gaslighting. It’s real and dangerous. I felt scared and so I stood out of my hospital bed and started taking off all the monitors and got dressed. I told my mom I wasn’t safe and was leaving. That I would follow up with my primary care back home who I love. There was no clear reason why I was in the hospital. I had already met my goal and was declining from no food or water. The nurses kept wanting me to stay for the next shift because there would be a new doctor and I could be reevaluated. They convinced me to have a meal and to just wait for a few hours or a new doctor. I did. Only to find out right before it would be the same doctor. I think they wanted me to stay because once you hit midnight again the hospital can charge for another full day even if I’m only there for a few minutes after midnight.

The doctor finally started sending in meds, but smaller doses than I take (according to the plan created by my neurosurgery team). I told my mom I was done with this pettiness and just wanted to go home where I know my parents can take care of me. I was physically not in that much pain and suffering at home.

One of the nurses I love checked me out before midnight and we got the number to call about that doctor. When we go back in two months for the follow up appointment I might want to follow up with what happened in person cause that was wrong. It took days to get my pain manageable again. I also have other conditions like POTS and fibromyalgia that were caused to flare because of the lack of care I was receiving. I have to be on it with my health. With the foods I eat, hydration and medication. Not even mentioning brain surgery. I was denied all of that under this doctor’s “care”.

I’m sorry it’s taken a couple days to update about this. I’ve had nightmares about it and it’s still real upsetting me to think or talk about it.

Shae 💜