Weathering Chiari

I got new x-rays and my staples out!! There was absolutely no damage when I fell. I just need to move slower. The skin around the staples was tender and ready for them to come out, so it was not that painful. I was able to have my neck brace off for a few mins while they took the staples out and examined the scar. Everything looks good. The scar is hard, but that’s because they retracted the muscles during surgery so they are cramping now and readjusting. 

It’s still scary not knowing exactly what to do with this incision. This is my third brain surgery but a physical therapist and occupational therapist usually will come in and help you shower and show you how to move your body. (It’s a horrible awkward experience, but I’m all for safety). The therapists came in when I was in the ICU and said the would come back later when I was downgraded. I got downgraded and there was a bucket of shower items, but they never came to show me how to use them. There’s a bowl you used to brush your teeth so you don’t bend your neck and I don’t remember that, but this is my first neck surgery and it was all new to me.

This is another thing looking back that is ridiculous. the nurses were not sure if I could have ice packs. They kept retelling me I didn’t have a fever, so didn’t need one. I met with one of the PAs for the surgeon today and he said they get scared with neck braces and brain surgeries and don’t know what they’re talking about, but that I can and should use ice. 

When I was discharged they also didn’t  know what my shower protocol would look like and didn’t show me how to shower with a neck brace. I was told I was the only post neurosurgery patient in the neuro ICU, they were a bit unsure about those things and it seems like they were just focusing on making sure my vitals were okay. 

My mom and Isla helped me shower my hair the day I got home. We were all a little scared. It was 4 days post opt and I had clumps of blood and inflammatory fluid cemented in my hair. 

Today they looked over my x-ray and said that everything is okay after the fall. The brace kept everything in place. I also got a special brace for the show, more uncomfortable than the regular one, and I got some replacements covers for the brace so it won’t get gross. The brace goes directly over my incision so we have to keep it really clean. 

The other thing is my throat is really sore from being intubated. I had spots all over my mouth and tongue, but thankfully they passed. Now I just have a hoarse voice and what feels like a thousand cuts in my mouth. I’m bracing before I swallow. They gave me a numbing mouth wash and some rinse which is helping. This is my third surgery, but there is still so much I don’t know. Grateful for the progress we made today and finally getting permission for ice packs. 😂

Thanks for praying,

Shae