Navigating Medical Procedures With SMA

If you live with spinal muscular atrophy (SMA) of any type, then you know how difficult it can be to have medical procedures done. There’s a lot of logistics and orchestrating the right pieces into place to make a simple procedure or test go smoothly and safely.

Telling the medical staff what my body can do

I’ve been experiencing severe lower back/tailbone pain for a few months now on top of all my other pain and discomfort. We’ve been trying to pinpoint what’s going on with my doctors, and that’s meant a lot of tests like X-Rays, CTs, and MRIs. In the past, I’ve not always had great experiences with staff when having these tests done. They don’t know about me or my condition, so upon arriving, I am always immediately advocating for myself and giving them a quick rundown of what my body can and cannot do. I have to tell them certain parts of my body can’t be moved normally, and that I can’t move at all.

Oftentimes, I’m met with empathy and understanding and people willing to do whatever it takes to make the situation as comfortable as possible. I’ve unfortunately also been met with people who don’t know how to handle me and have had to leave places without having a test done because locations don’t have a Hoyer lift or enough people willing to help make the transfer to the x-ray able another way.

It's a relief to not have to worry

Today, I want to shed light on the good though! Last week I went to get a series of imaging down for my back and was apprehensive as usual but also happy to go to find answers. I made sure to pick the proper location where I know the staff will be on their game and have a Hoyer lift. I cannot tell you how much of a relief it is to go for a test and not have to worry about anything.

The team of women that transferred me from my chair to the x-ray table, along with my mom, were absolutely amazing. They listened to my needs and about how my body worked; what I could and couldn’t do and reassured me the entire time that they were going to do the best they could to make this situation painless.

Tweaking the procedure to suit my body

They used a Hoyer lift to safely get me out of my chair and onto the table, with adequate help on hand. I was given a soft pad for the table when I mentioned jokingly how much it hurts my back. I didn’t even know that existed because I’d never been offered it before. It helped make the process a lot less uncomfortable.

After expressing that turning from side to side on the hard metal table would exacerbate my pain, the technicians changed their plan and took images a different way that didn’t require me to be turned at all. They went so far as to bring in a pediatric machine that they could manipulate further to get different images all while keeping me calm and comfortable. The technicians always retook several image series to make sure they got great images for my doctor to interpret.

Their taking their time and listening made all the difference in the process and way I felt about it.

Making medical procedures less traumatic

All of this goes to say, I wish every procedure and test could go this smoothly with people that take the time to care and listen. Because it’s really that simple. To make a medical procedure less traumatic for the patient with a disability, just listen to them.

Respect that they know more about their body and disability than you do in this scenario. Get creative and don’t be afraid to make it easier on the patient if it means a little bit more work for yourself. Medical trauma is horrible and I have stories I could tell that are awful, but I wanted this article to shed light on the good; because we could all use more good in our lives.