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.
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.
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.
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.
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.
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
Weathering Chiari 