It has been 22 days since my spinal fusion. My back pain is very stable and doesn’t hurt much at all. However, my nerve pain? Well, that’s a completely different story. But before I catch you up to speed on that, heres an overview of the past two weeks.
On Tuesday, August 11th, I went to see my plastic surgeon. At this appointment, he removed my drains and large bandages. He placed sterile strip type bandages down the center of my back over my incision and gauze over the drain wounds. I also got clearance to take my first shower two days later. The bandages are starting to come off now and the healing seems to be going very well.
One Friday, August 15th, I met the Physician’s Assistant via telehealth from the orthopedic surgeon’s office. This was just a check-up to see how I was recovering. We talked a lot about my nerve pain and she looked at my back. She also showed me my x-rays which shows the before and after of my rod placements. As a reminder, they removed the old magnetic rods that I had grown out of and put in new permanant rods for the spinal fusion. The new rods go up much higher on my back which has taken some getting used to. While they feel funny right under my neck, they help with my head control. It’s impossible for my head to fall forward or backwards anymore. I guess that’s a good thing but it feels really strange.
Even though the back pain is pretty much gone, it is still hard for me to sit up for a long period of time in my chair because of my nerve pain. For whatever reason, it feels much better laying down and I am much less anxious and upset about it. Every day, I try to sit up more and more in my chair and my goal for tomorrow is to sit up for a whole day without taking bed breaks (today my record was 8 hours). For comparison, I used to be in my chair from 7am until about 10pm every day. Some things that my nerve pain when I am sitting up are pillows under my arm, a heating pad, and a raised arm rest. It is also helps when my moms entertain/distract me but they are very busy with work right now so that’s been tough. Because I am not feeling great, I don’t always feel like talking with my friends.
Nerve pain is the absolute worst! In addition to the pain being bad, it is also limiting many of the things I used to be able to do. I can hardly do anything with my left hand. This means I can no longer hold my phone and text easily, type quickly as I am only really able to use my right hand, and play piano. It’s also uncomfortable to be at the table for a long period of time. You can see my hand in the picture below and I was trying very hard to type with my left pointer finger. It’s difficult and hurts a lot to open my hand. I am dictating to my mom right now because it would have taken me forever to write this blog.
One of my favorite things to do is lay in bed and scroll through and text on my phone. But yet, it is one of the many things that my nerve pain has made difficult. My mom’s friend recommended a gooseneck phone stand that you can see in the picture below. This is very helpful to me when I am laying down and I am unable to hold my phone like I used to.
I recently did a telehealth appointment with the first Neurologist we could meet with as my pain was getting worse. I spent a long time describing my pain and showing him the movement I have in my left hand and arm. He thinks that I might have ulnar nerve neuropathy and feels confident that it will resolve itself over time. He increased the amount of the medicine, gabapentin, that I am getting and encouraged me to do a follow up in person visit in a few weeks. The pain in my hand is not constant but I often have 2-3 second bursts of pain in my pinky, ring, and middle fingers and pain that travels from the side of my pinky finger up to my wrist. One of the things I’ve found that helps a little bit is to shake my fingers like in the video below. However, this gets VERY annoying after doing it for hours and eventually, I start getting very overwhelmed and upset. Nerve pain overnight is also extremely uncomfortable. I constantly ask my mom to turn me and honestly, I’m not even sure why I request to be turned when the pain is in my hand. I am just trying anything to feel better and get some sleep.
We believe that NYC schools will start on September 10 and for now, I am going to be doing 100% remote learning. I was very independent with my remote learning last school year but with this new nerve pain, there is a chance that I am going to need much more help from my moms, especially with my typing. For now, I am trying to stay positive but have some pretty difficult days. I am also getting lots of snuggles from Midas.