Fundraising for SCI treatment – A Patient Interview With Nikola

Fundraising for SCI treatment is an inevitable part of the process. Whilst many patients pay privately, this is not always possible but there are ways of raising the money with external support. Many of our patients use pages such as to raise the cash. At Verita Neuro, we offer as much support as possible to patients through their fundraising process, offering advice and keeping in touch. One such patient was the awe-inspiring Nikola, from Serbia, who covered some of the cost of treatment himself but was greatly aided by amazing support from the community. Our Director of Patient Services, Hanna Charles, interviewed him to learn more about his treatment experience.

Could you tell us a bit more about yourself? Introduce yourself to everyone.

Okay, my name is Nikola. I’m from Serbia. I’m 31 year old and I came here, to Bangkok, for epidural stimulation after maybe three years following my injury. I have a spinal cord injury, the level is T5 and it’s a complete injury. I got injured in a car accident – actually, I was riding my bike, and I got hit by a truck. I first started to heal from injury in a hospital in Serbia and that lasted maybe one year altogether and treatment, including some practice in physical therapy. So after one year, that was it, you know, I hadn’t had any major improvement and then it was like ‘Okay, now you do it on your own’. So that’s when I started to think ‘what can I do myself to make some improvement?’ and I started to research. From the start, there is always a lot about stem cells and some physical therapy is the usual stuff. But there is also a lot of discussion about new stuff and improvement in treatment and that’s how I got to epidural stimulation.

Could you tell us, in your own words, your own way - what is this treatment?

Okay. My idea of this treatment was that I received some electrodes in my spinal cord, and they will help me to move and actually I was pretty much right!

So there is some kind of device that I have now in my spinal cord that helps me to transfer the signal from my brain, and to send it to my leg and any other muscle that I want to move. After my surgery here, and after my first mapping, I actually got some muscles moving, first on my leg, and then after that we worked on the core muscle. In parallel to that I have received some stem cells and my improvement after stem cells was not something major, but I think maybe in the future, it will be more. We usually have to wait at least four to six months, so it’s still okay, you’re right. 

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So you came from Serbia. It's quite far from Thailand. How was your decision making process?

Actually, my decision was pretty much on the table all the time, because once I’d received some information about it I thought it was best. But you always make decision to go there and then you realize that there is something better and you change your mind. If you’re gathering funds for treatment, like I was, and everybody’s helping you, and you change your mind like that, you always worry, will they take me seriously? You know, ‘He’s thinking something, then he changed his mind’. But I was like, I need to make the best decision, that’s my goal and if somebody doesn’t understand that, that’s also okay! I almost made a decision to go to a clinic in my country. They do physical therapy, they have some stem cell therapy, and they’re quite good. After I finish here, I will go there to continue my physical therapy. So, it would not have been a bad decision to go to them, but when I realized about you guys then I figured out that this is a bit more than that so that’s how I decided to come here.

So you mentioned your fundraising - we had quite a few people also asking about the price of the procedure and how long the stay is. Could you maybe answer this?

Ok, I don’t know exactly, because of the change of currency and some of my bills were paid by the foundation and some from private budget. So I think more or less it was around €90,000 – obviously there is a transport bill and stuff. In the pandemic, it’s been a little bit more difficult. However, you made it so we had to do shorter quarantine actually, 10 days, so that was a good thing.

How is your everyday here? What do you do when you wake up? And how does the day go?

Well, I’m busy here because that’s why I’m here! The hospital’s great – we don’t actually need that kind of luxury but it’s really nice and the food is excellent. I like my food! After breakfast, I come to the third floor, where we do physical therapy and there is a first session of mapping. After that, I have PT after that, again, mapping so I’m during the day, almost all day. Maybe in the evening, I have some free time, but the day is quite busy.

How could this treatment help a paraplegic patient like yourself? What improvements have you seen so far?

Well, if you know a paraplegic person then you know that besides that they can’t walk, they have some other problems like bladder and bowel problems. Some of the patients have strong spasms and that also can be a big problem. So, the first major thing that I managed to do here is to make a program for inducing spasm and it works great. I actually have three programs so I can combine them. The major progress that I’ve seen is movement of my extremities – I can move my leg. It is not a perfect movement and I cannot control it perfectly but it is there and I can work on it and that is the most important thing. It is a big change but I need to practise now and make it more perfect. Also, we have done some measurements. We did some measurements on the first day and we did it again yesterday to compare stuff and there is a two centimeter increase in the volume of my leg muscles. I don’t know if there is any bigger proof than that! That I can move my leg and that I can build my muscles.

Before you came, what was your biggest fear undergoing the surgery?

Well I think like anyone else who has to have some surgery you feel that something will go wrong. You don’t know what, but you have some fear like that you know? It is new stuff, it’s not a particularly common procedure so you’re a little worried, ‘Is it gonna be okay, will it go well?’ and stuff like that you know. But nothing abnormal and after the surgery, the next day I could almost get up and move myself and be active so then I saw that it was nothing. I had a very good recovery, nothing special, no infection, no temperature, only a little pain. I spoke with other patients and they had some infection or temperature, but I was okay.

And what were the first improvements after surgery?

Maybe three or four days after surgery – actually, straight away after surgery when I wasn’t even awake, they tested my epidural stimulator to see how my body would react and I had some reaction right away. I saw a video of it and it was excellent, but it was not controlled movement. After first mapping, there was movement right away, my knee lifted up because my first practice was in my bed. We were a little shocked with the movement! In the beginning it is morebeginning is more of a focus on a single movement and then as we map, as we program the device more and more, we can build bigger more complex programs. Then we can combine movements – knee up is quite simple, but if you want to separate left from right or something then it requires a lot of focus as well. It’s tiring, physically, but also I think mentally as well, trying to reconnect again.

We were talking about mapping earlier. Do you think you can explain what mapping is, who does it and how are you involved in the process?

Mapping is some kind of setting process for the epidural stimulator, to transfer the signal the best way and for me and my body to understand. So we can turn on the device and it will work and maybe produce some movement. We would not know what to do and how to react if we wanted to move on our own – there’s nothing so mapping is like precise work to establish what you need to do to make a movement that you want. I think that is the best explanation that I can give. Mapping is done by a physiotherapist who is trained for it and the most important thing I think is practice. Mapping can make your movement precise and if the mapping is good, then you can have massive potential from the stimulator.

Now I’m learning to use the device to turn on the program by myself so I can remember what program is for what. I have 12 programs so if you want me to turn on every program, I will need to look on the web, because I am still learning! But mapping went well and we found all the appropriate programs that we could and now it’s all up to me to practise.

We mentioned the spasticity program previously, when do you use that?

Well, when I go to sleep, I use program for night reduced spasms and it works excellently. During the day, if I’m active or if I sit too much in my wheelchair, usually my spasms go up, and then I use program for that to help me. The night program is also quite important because it’s about stimulation, so it helps with spasticity, but also over time, it can help to regenerate the spinal cord. So this is long term – we’re looking at maybe several years, but with consistent use, it can also help your spine to regenerate due to the stimulation. So it has two purposes actually.

Did you regain control of your bladder?

Actually, no, I’ve had no improvement of bladder function but for the bowel program, I have had some improvement because now I can turn on the program and it can help me to squeeze my stomach. But usually there are indirect improvements because it helps with the abdominal area.

Does it work for those who have developed spasticity in the limbs over time?

Yes, I actually have pretty much strong spasms – on a scale from one to four, it’s three, a strong three. It was also my question when I was thinking of getting the treatment. So funnily enough, spasms and neurological pain are a good thing in this situation because it indicates that there is some kind of signal going through. Also, spasms helped me to make my movement even stronger so actually, it’s better if you have spasm. You can reduce it with the program, or you can use it for the movement.

After the procedures, do the patients have to still go through physical therapy?

Yes! After the procedure, after the surgery, yes, yes. I think it’s the most important thing after surgery because physical therapy with mapping can be the best stimulation for your movement and for your recovery. It helps you get more control and quality of movement. Also, if I think about it, without proper physical therapy and proper movement, sometimes there can be a problem in the joints. I have a problem with my ankle joint and if you are not improving this part, you will never go as far as you can.
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Have you regained any sensation so far?

Actually, I have a little lowering of my feelings on the left part of my body, maybe one or two centimeter but that’s good. I can also feel contractions of my stomach, even without the stimulator. I can’t yet make any functions but actually, there is some contraction and maybe I can work on it.

How often do you have to charge the stimulator?

Well, we work with high intensity here so with that tempo I need to charge every other day with the regular physical therapy and regular use of my spasm program. If I also need some movement for practice, I think maybe every three or four days. It’s wireless and there is a belt that I put around my thumb and then I have external battery power. It’s on the same remote where I can control my programs, and I attach that wireless charger with my remote. It is quite fast and there is a program for faster or slower charging, because there is some heat on the wireless charger, but I’m not bothered by the heat. It’s not too much. So I go on the first charge and maybe in 45 minutes – no problem.

Is the mapping process painful?

No, no, it is tiring. It is hard, you know, because you try to do something, and you’re not a baby anymore, so you don’t know how you learn to walk. You try to move your leg, you try to do some movement, you have visualization that you can do it properly, but it doesn’t go like that every time. So that’s a little bothering and it requires a lot of effort but if you have it, then everything is okay. One day you manage to do your movements so well and the other day, not so well. But then the next day, it can be better and there is some oscillation in the progress. But that’s just normal.

How does the family support work? How do they help you with your recovery?

That’s a good question. Yes. Well, for family support, I need little support. I am pretty much independent. But maybe in the free time, I like to have someone to speak with and go somewhere with. I’m not alone, and there are a lot of good people here. But when you’re with someone from your family, it is the best. My mom is here and we are together in everything so I think it’s better if you can come up with some.

Can you walk again after the procedure?

Well, independently no, but with some support? Yes, I can. I can take my steps but there is not enough strength in my muscles right now so there is not enough force to to stand. I think maybe with some time and practice, maybe I can do some steps. I don’t know. Now, I can bear maybe 70% of my body weight. After the accident, my legs are not too strong, but I can stand.
The above is not a verbatim transcript of Nikola’s interview and the exact wording and order of words has been edited to be read more easily. It is also important to note that this transcript is from a video recorded during the COVID-19 pandemic, which is mentioned.


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