EDS

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

weatheringchiariLeave a comment

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

weatheringchiariLeave a comment
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

New Surgery Date With Neck Fusion

weatheringchiariLeave a comment

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

weatheringchiariLeave a comment
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

weatheringchiari1 Comment

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

weatheringchiariLeave a comment
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