I felt complete peace as I was rolled into pre-op. 30 hrs later I woke up in a very intense amount of pain. Immediately I could tell my head pressure and typical pain was gone. I was only left with surgical pain. Intense surgical pain. It was like I had my skull screwed into… oh wait I did.
It was so painful as the nurses rolled me side to side. Putting their arms under my arms up to support my head as they pulled me upwards. Adjusting a the “pillow” I laid on. It was one of the Drs. invention. A foam square with the middle cut out to not apply pressure on the surgical site.
The ICU was my own personal nightmare. It triggered severe PTSD. Unfortunately when trying to communicate with a language barrier was more than difficult. They wouldn’t call the one person I knew could translate what I was going through. They wouldn’t call my husband. They wouldn’t give me a phone to use a translating app. It was a long night in the ICU. Tears streamed down my face as I pleaded with God to give me peace and be with me in that moment. God heard me. He heard me in that lonely bed, completely naked under the sheet and terrified.
With the nurse shift at night came my angel. She had spent almost a year in England spoke English fairly well. She still didn’t understand what PTSD was no matter how I described it but she was willing to listen to me any hour of the night and hold my hand. She asked me how I dealt with it normally and I told her about writing, music, the outdoors, coloring. She brought me a pen and paper and she left her phone playing one of my favorite christian artist as I fell asleep.
The morning brought short relief as Trevor was able to come visit me for an hour. I knew I was going to be able to the ward that day and was persistent asking when I’d get moved. I was full of relieve when I got moved just a few hours after seeing Trevor.
I felt like I could finally rest when I got to my recovery room. I also got the surgeon to find me a real pillow that would keep my neck in alignment.
Everyone was surprised by my progress during my hospital stay. I was sitting up in a chair day three. Was able to start doing very short distance of walking day four. I came off my IV’s day four as well. Day five my thought, and mind become more clear. Like I was no longer trying to think through mud.
I was able to walk without my crutch just days after my surgery. I could feel my legs, had my taste buds back, no headache, blurred vision, shaky limbs. I could feel temperature again. In my mouth and on my skin.
On day 8 I was discharged. A few days before schedule which allowed me to have one day with Trevor at the appointment before saying goodbye to him. He had to go home to be with our children and our dear friend Dorothy, was willing and crazy enough to travel to Spain to take care of me.
The recovery the first 3 months went really well. I couldn’t have asked for a better recovery. Around 4 months post-op things started to not go as smoothly. I struggled with head pain returning, slight tilting of the head and pressure change started bothering me again. It was a bit discouraging but I expected a rollercoaster ride for healing and this was just part of the journey.
Around March of 2021 I came out of my neck brace once again to test the waters. I did fairly well and it felt nice to have that little movement in my neck once again. Slowly, symptoms started returning. Migraines, ending up in bed a few days a month, eye pressure, tingling arms and legs eventually going numb.
Finally after fighting insurance 5 months I was able to get my post-op cat scan. We saw some really great things and some interesting things. My right side was fusing. The cadaver bone has nearly completely fused. On the left side my cadaver bone has been neither accepted or rejected. It just sits there. Along with that we saw some signs of increase instability below the fusion. We went ahead and put me back in the neck brace to see what symptoms improved with it and ordered x-rays.
The good and bad news is that I improved a lot in the neck brace. That gave me relief but also made it nearly impossible to live outside of my neck brace again without terrible rebound pain ending me up in bed the next day. The X-rays confirmed our suspensions about increase instability.
As of right now I’m not sure what the future holds. We are looking for tethered cord next and then we will make the choice which surgery is needed next. I’d love a ‘this surgery fixed everything’ story but that is not the life of someone with EDS.
Mother Hidden 