Thoracic spinal cord injury, whilst less severe than cervical level injuries, has an intense impact on the lives of sufferers. 35% of spinal cord injuries are at the thoracic level with the thoracic level vertebrae being those which have an associated rib. These injuries are less likely to be fatal but do normally leave patients paraplegic, without the use of their legs. The potential benefits of physical therapy for thoracic spinal cord injury are great and when combined with epidural stimulation and stem cell therapies, the prognosis is excellent. Some of our team, Medical Director Dr Nasir and Director of Patient Services Hanna Charles, spoke to patient Joao about his experiences and progress.
Joao, please can you introduce yourself?
Nice to meet everyone, my name is Joao. I’m from Brazil. I’m 24 years old. And I’m really happy and really happy with the epidural stimulation. I am really focused on physiotherapy in Mexico last month, and every time I go to PT, I have more results. I don’t know the potential yet. But I know it’s really good. Very happy. I have a T9 level thoracic spinal cord injury and was injured in 2018, over 3 years ago. I have a complete injury and I had no control below my injury. I could move nothing. After the previous stimulation, after we started doing mapping, we already got a lot of movements and much more trunk control. My goal is to walk again and I’m reaching it. It’s a slow process, but every time in PT, I’m having more and more gains. Two days ago, for the first time, I turned off the simulator, and I could stand for three minutes with no programs. I expect in the long term, I will gain more voluntary movements without the simulator.
How quickly did you see progress following the treatment?
To stand before the treatment, I needed to use braces. It was impossible to lock my knees. But right from the start of the mapping, I already got movements from the legs, some flexions and standing. And every day I got more and more results. By, I think it was four weeks maybe after surgery, I was already able to stand. My knees were looking really good and each time, I had more progress. The mapping was really cool because I didn’t move my legs for three years and then they started moving really fast. The guys are really great – everyone’s really good, like I’m making friends for life.
I feel really good. It is hard, but it’s getting much better. I’m focused on trunk control. I think I started getting in the walker, maybe two weeks ago? And I’m already having big advances. Like I was saying every time I go to PT, I get more and more results. So it’s really hard to know what to expect, but it’s good.
Could you tell us about the whole process?
For me, the surgery was simple and the recovery was really fast. I spent one week recovering from this spinal stimulation surgery, and one week for the stem cells. I didn’t feel a lot of pain. And you’re seeing from the physiotherapy, like, when I got the injury, I’ve focused on getting ready for recovery and that really helped me for going for rehab. I think it’s nice if you’re training a little bit before, so you’re already used to some training because it’s really hard work. The physio is five hours a day so it’s not easy and sometimes you’re tired. But I was always thinking of the bigger picture. I really wanted to get the best results I could and the best programs for me personally. Every day I’m getting more and more results. I don’t know where I’m going but I’m really happy with the results. And the stem cells are a really important part of the treatment. It’s still early but I feel my sensitivity, going down my body. I can feel my abs more and my back, my lower back.
Did you see any other side effects like increased spasticity or maybe some neuropathic pain?
I got more spasticity, especially in the morning. I have a program that’s for sleeping so I don’t know if it’s maybe that but when I wake up, I have more spasms. But that’s the only side effect and actually, it helps me sometimes in the physical therapy. For example, the first time I could stand without a program, maybe was one of the reasons was the spasms. The spasms show that the pathways are still functional.
So in your daily life right now, what programs do you have and use?
I have some programs for leg work like extensions, some for glute stimulation and I have a lot of walking and standing programs. I have some trunk control that I think that’s really good, that I can use every day for activities like doing dishes or driving. The ones that are most likely the walking and standing ones. I use whatever I can sometimes with friends at a barbecue or going out. About remapping, it’s a good thing, it’s a door that’s always open, you can do it and get more function and programs. So it’s a good thing and it means you always have more chances to get better.
How do you operate your stimulator?
So you have the control, for example, you’re going to activate the stimulation program. Or let’s say you’re wanting to stand on the right leg, I will turn on the right leg intensity. But if I don’t work to help my body send the information, it won’t work, it’s not automatic. I need to find the right information and give my body the right positioning to send the information so it passes, like a robot. You’re sending the information from your own mind in a way and it’s hard because you have to think about moving in a certain way for it to happen.
What was your experience of the clinic in Mexico?
My experience was very positive. I didn’t really know what to expect – I didn’t know how it would be with mapping and staying out of my own schedule for a long time but it was really good. Everyone’s really friendly, people in Mexico generally, if I needed help they would be there. It passed really fast for me, it was so so good. I could happily stay some weeks more. For everyone considering doing the treatment. I think it’s a really good idea. I got many results in less than three months. And I’m expecting big, big results for this year. I think it opens a big door and you can always get better. If you have any question, you can email me or text me. I’ll be happy to help anyone.
The above is not a verbatim transcript of Joao’s interview. Some comments have been slightly altered or re-arranged in order to improve the reading flow. If you would like to hear the full webinar, you can visit our youtube channel here.