My experience at Cognitive FX Concussion Center & How I feel two years after + before & after photos

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I will never forget that day. May 23rd in 2017. I went home on my scooter and had an accident; I bumped into another scooter. I remembered that I thought I was lucky, but a few days later, I started to feel worse. Those days became weeks, those weeks become months, and before I knew it, I’d been “sick” for 1.5 years.

I felt so lost; I didn’t know what was going on with me because I didn’t fall on my head. Even doctors didn’t know what to do; they told me to rest and finally sent me to a psychologist. I never felt so lost and lonely in my life. What do you do when you don’t know what’s wrong with you, and no one can tell you? After 1.5 years, I finally found answers from a clinic that specializes in concussions: Cognitive FX in Utah. I went to their clinic for treatment, and it changed my life for the best.

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My story

In May 2017, I got into a scooter accident, which has caused me a concussion and whiplash. I didn't fall on my head. I was conscious and I thought I only hurt my ankle. So I thought I was lucky and went home, not knowing I just walked into a new life. The next day I felt so weird but I went to work anyway. I didn't know what was going on because I didn't fall on my head so what could it be? I went to work for the next 3 days as well. But my head couldn’t manage it anymore and I felt so emotional not even knowing why. I took one extra week off at work. That extra week off ended up becoming a month, the month then turning into half a year, the half a year lasted and became a year. Though, finally, after that year, I have never gone back to that office again.

Read my blog: How a single concussion changed my life.

The first year

During the first year, I still didn't know what was going on with me. I felt guilty because I couldn't explain my situation. I tried acting like nothing was wrong most of the time, but from the inside, I felt like EVERYTHING was wrong. I had a hard time sleeping, couldn't concentrate, felt overwhelmed all the time, cried a lot not knowing the reason why, felt so tired, had pressure in my head all the time, couldn't read, couldn't watch any screens, couldn't manage any sounds/light, had shortness of breath, felt a pressure on my chest and was so restless.

The first year was a hard time. I did not know what was going on with me. I often wondered if I would ever recover or if there were any recovery at all. Would I get better someday? After a year, I still didn't feel any better than at the beginning. "Will this be my life forever?" No one could answer those questions, not even doctors. No one could tell me what I needed to do to recover. Did I need to rest, or should I do some activities? Should I exercise, or would that make it worse? I felt so lost, not knowing what would work, and no one could tell me.

This photo explained exactly how I felt:

And there it was Cognitive FX in Utah

I Googled my symptoms on the internet and came in contact with someone who was struggling with similar ones like mine. She sent me an article on LinkedIn about a Dutch woman who described her story and wrote about a treatment in America. I read her story, and I recognised everything. I thought THIS IS ME!

After 1.5 years, I found out I had a concussion

I scheduled a call with this Concussion Clinic and told them my story. They immediately said you don’t just have whiplash; most symptoms are caused by a concussion. WHAT? This was new for me! They told me you could sustain a concussion from having a whiplash. I was confused; why did NO doctor in my country know about this? Why couldn’t anyone tell me this during 1.5 years? It made me mad, confused but also “happy” because I finally knew what was going on with me and finally felt like someone understood exactly what was the case.

I didn’t want to get disappointed again

The call left me in tears; it felt like a relief, but I also felt confused. I’d already tried so many things, which always turned out to be a disappointment. I’d already spent a lot of money on different kinds of treatments, and this was the most expensive one. But on the other hand, it felt there was finally a doctor who knew what they were talking about after searching for such a long time. I remembered I was a bit sceptical about it as well because there were no guarantees, and every injury is different. But I listened to my intuition and decided to go for it. I’d already read so many positive stories, so it was worth the risk. I scheduled my treatment in June 2019.

The treatment

Cognitive FX is a Concussion Center in Utah, and it almost became “famous” here in The Netherlands. During my week, there were 7 other Dutch people, and I heard this is almost the same every week. At Cognitive FX, they use a cutting-edge brain scan called functional Neurocognitive Imaging (fNCI) to reliably detect which regions of your brain were damaged from your concussion or brain injury. ​You can find all information at their website: https://www.cognitivefxusa.com/

I traveled all the way from Amsterdam to Salt Lake City by myself. I decided to go alone to the treatment as I’d already traveled a lot myself, so I was used to that. I rented an Airbnb in Provo from May 29 - June 12 close to Cognitive FX and took a taxi (Lyfft/Uber) every day, so I wouldn’t have to drive myself. I never had a problem finding a taxi, there were so many!

The costs

I got a lot of questions about the costs, so let me share this with you:

• The treatment itself around $9000

• My Airbnb $1000

• Taxi costs (including Airport) $200

• Flight $600

My first scan

I had my first fNCI scan the week before my treatment started. I was pretty nervous, but I felt a warm welcome the moment I stepped into the clinic. Everyone was so kind, and before I could even say the lights or some noise bothered me, they’d already asked about it. I felt like I could be myself instead of pretending I was okay, such a relief!

Before my scan, we sat down, and they explained very well what I could expect during the scan. I remembered they gave me earplugs before we went into the scan because the machine was really noisy, and I appreciated that! They did two scans. The first one was a scan where I had to do some brain exercises. I could talk during my scan with Brain (such a lovely person!), and he explained every exercise again before it started. To give an answer, you had to press some buttons. Don’t worry, it’s easy. The second scan was an MRI just from the neck. See the result of my first scan below (I need to go to the green part at the end of the week):

Treatment days

I was pretty nervous for my first day, but again, the moment I went inside the clinic, I no longer felt stressed anymore. I met the 9 other people who were there the same week for treatment (7 of them also from The Netherlands), and we felt like a close group. I loved that we were doing this individually but also together.

My first day started with a chat about the results of my scans. I was nervous. What if they can’t find anything? What if my test results are normal, and I’d come all the way to this clinic for nothing? This was what I always experienced at other doctors. It was such a “relief” to hear that they confirmed I had a concussion. Even better, they could describe exactly all the symptoms after looking at my scan. I hadn’t talked about my symptoms, so they couldn’t know this! FINALLY, I found a doctor who could measure my concussion and knew what to do! It felt like I was in great hands, and couldn’t wait to start my treatment.

They gave me my schedule for the whole week, and my first thought was, this is a lot; what if I can’t handle it? They comforted me and told me that I’d get enough breaks, and it would be okay. I decided to take it hour by hour and see how things went.

Interval training

My first class was physical interval training. We had to give everything for 30 seconds/1 minute, and after that, sit down on a chair and focus on your breath. Best is to inhale for 4 seconds, hold for 1 and exhale for 6, just sitting down until your breath is normal again. And then I repeated this 3 more times. I couldn’t handle more times on my first day. Such a strange thing because I did some exercising at home as well, but this felt different. It made me nauseous, but they explained that’s normal. After my interval training, I had a small break of 10 minutes before someone picked me up for my first class. After lunch, they repeated the interval training, this was my least favourite part. Every day, you would start with interval training in the morning and do it again after lunch.

Other classes

Besides the interval training, you get different classes. One, for example, was a cognitive class for 1 hour. You sit down with another person, and he/she asks you questions, shows you some photos, and you need to remember them afterwards, some mathematics, deduction puzzles or language exercises. Another class was about multitasking. You’re standing on a balance ball, have to catch a ball and answer a question, all at the same time. There are many other exercises, which you can find on their website.

I felt different on Thursday

Before I went to this clinic, I’d read many other stories, and lots of them mentioned they felt different on day 3, on Wednesday. When this wasn’t my case, I almost panicked. I didn’t feel any difference on this day! What if this doesn’t work for me?! I tried not to panic and just focussed on my treatment. They told me everyone is different, and some also feel improvements weeks after the treatment.

But then, on Thursday, someone from my group said to me, your eyes look brighter! And during lunch, I noticed that my head felt much lighter like my fatigue was disappearing and the feeling like there is sparkling water in your head. It was a bit bubbling, it sounded scary, but it felt great! Like my head was opening up, and I noticed all sounds didn’t annoy me as they used to do. I was having lunch, and a lawnmower was right before me; I’d never “enjoyed” a sound like that ever before haha.

That evening, when I got home in my AirBnb, I had the feeling I wanted to listen to music, something I hadn’t enjoyed for almost 2 years. The sound didn’t bother me that much anymore! Normally, I stay home in the evening to recharge, but I felt like I wanted to take a walk outside, so I went outside with some music in my ears and enjoyed this walk so much!

I felt worse on Friday

Friday, the last day of this treatment week. This day, I woke up and felt so emotional. I didn’t feel good and had the feeling I needed to cry all the time. I panicked because this was my last they, so why am I not feeling great?! Did I overdo it last night? Or is it the excitement of my last scan? I shared my concerns with CFX, and they told me that it’s normal to feel like this. I didn’t expect to have any setbacks after that great day on Thursday, but I had such a long week and needed to settle down a bit.

The final scan

I continued with my scan, and turned out I did a great job and ended in the green part and even in the minus part. That’s how a normal brain would score on this scan. But if a normal brain should score like this, why am I not feeling totally normal? They explained that it takes time, and your brain needs to adjust to the new situation. See the results of my final scan below (I am in the green part):

Continuing treatment at home + aftercare

The whole week I was in such great hands, and now I went home all on my own. This felt a bit strange; now I had to do everything myself. The exit chat was all about how to implement the exercises into my daily life. During my first month, I had to continue doing interval training 5 times a week, followed by cognitive exercises. So you continue the treatment at home, and you will improve more during that time. After that first month, I did the intervals 3 times a week and ended up doing them 1 time a week after a few months.

I loved that you always could ask your questions to CFX, and they add you to a Facebook group for graduates. So you are not just all by yourself because I am sure some questions will come your way after the treatment. They are always so helpful!

The Saturday after the treatment + before & after photo

On Saturday, I woke up, and I felt more normal again! That day, I went for a three-hour hike, something I could never have done before this week! I was so happy that I felt closer to my normal me; this week changed my life.

Tip: I did the Stewart Falls Hike, it’s amazing, and I just love waterfalls. If you feel okay and have the time, please do this one!

During my hike, I took a photo and compared it with a photo from before the treatment; look at my eyes! Such a difference right?

Before:

After:

Going home - my first weeks after the treatment

My treatment week ended on Friday, and I flew home on Tuesday. The flight back was so different than my flight to Utah. On my first fligh,t it felt like I had to survive, and now I was just sitting comfortably; I even watched a video! At home, I had to adjust to the different time zone, which took about a week. After this week, my parents came to visit me in Amsterdam. They asked if I wanted to have dinner at the terrace. My first response was NO I can’t, but this was just an automatic reaction, as that was how it was the last two years.

I decided to try it. We went to the terrace, and all sounds were not bothering me as much as they used to. They still bothered me more than before my accident, but it was such a difference as before my week in Utah. My dad told me that I looked different and that I was starting to have conversations myself instead of just answering others. I noticed it, too. I felt more alive and could even enjoy being there instead of surviving.

Setbacks are part of the recovery

Did I feel great all the time? Let me be honest, no, I still had my setbacks, but they were not as bad as during my first 2 years. Healing is not a linear process, and it’s always hard when you have a setback. But when I compare how I feel now with how I felt before, it is such a difference.

1 year after the treatment

During my first year, I continued to improve. I didn’t notice a difference every day, but when I looked back every month or every two months, I noticed improvements. After doing the interval training and cognitive exercises for almost a year, I decided to stop and see what would happen if I let go of everything and see my daily activities as training. It felt like I needed to let go and put my concussion more in the background. I didn’t want to focus on it, as it’s the main thing in life, and this really helped me to move forward. Letting go of all the things I needed to do made space for other things.

Now, 2 years after the treatment

Right now, when I write this blog, it’s almost 2 years after I finished my treatment at Cognitive FX. A lot has changed, and it feels like I am not in the surviving mode anymore. Of course, I still have days that I am in that mode and had setbacks during those 2 years, but I never felt as bad as before the treatment.

I have the feeling most of my issues right now have more to do with my eyes, and I am getting treatment for that, so I hope this will improve more over time. Also, sensory overload is still part of my daily life, but things improved and got easier, and it feels like I am still improving over time.

If I have to measure how I felt during my journey as a percentage, it would be like this:

My first 2 years after the accident: 10% recovered

After the treatment: 50% recovered

One year after treatment: 65% recovered

Now, 2 years after treatment: 75% recovered (still improving)

I am so grateful for the opportunity I had to go to this clinic. Cognitive FX is amazing, and I can never thank them enough for changing my life for the best.

During my concussion journey, I felt so lost and lonely.

I was feeling restless all the time. Doctors weren’t able to help me so I was feeling stuck. 🤦🏽‍♀️

My setbacks were the worst things ever and I didn’t know how to deal with them or prevent them. My days felt more like surviving than enjoying and I was always looking for a balance between rest and doing things.

Thankfully, I'm feeling much better now with the help of professionals who GET it and because of all tips and support from others in the same situation.

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