The backstory

1998 was the year that would change my life forever. That was the year when I was in a car accident. We were stopping by the local store on our way to school and the mother of my friend drove the car. We stood still and the turn signal flashed to the left towards the shop. Before we knew it a car hit us from behind and threw us into the oncoming lane. Then we were hit again by another car. I remember the immediate pain in the neck and head. There was broken glass everywhere, even in my eyebrows. Furthermore, I remember screaming and yelling. We were in incomplete shock. Then people came rushing out from the local store to help, people who had known me since I was a baby.

After a quick trip to the GP's office, it was concluded that I, under the circumstances, was in great condition, despite the fact that I pointed out that I had pain in the neck.

The car was a complete wreck.

The years passed and the car accident was forgotten. The pain was there all the time, and it got worse for every year that passed. I spent alot of time on my own in my room, and I made up excuses not to go out. I did not know the reason for my pain. The GP thought I was depressed and that the pain was psychogenic. I did not agree. It was difficult for me to express myself, it was not easy to describe the pain. I was angry and frustrated, and finally I stopped talking about it. I often fainted from pain. I was not taken seriously and I felt very stupid and small.

In middle school and high school, I would rather not have recess, I would just sit still at my desk. I remember looking at my classmates thinking "how come don't anyone speak about their pain?". I thought everyone had as much neck pain as me, I thought it was normal.

When I got my first part-time job when I was 17 / 18 years old, the pain escalated. I could not hide it anymore. I went to all the "specialists". Some of them said it would get better with exercise, and others said that the pain was psychogenic. This was tough to hear for a young me. Time and again I thought to myself "is this is something I imagine? Am I crazy?". It was taken MRI which showed nothing and I went on a three-week course called "neck and back rehab". Nothing helped. I have tried alternative medicine, muscle therapy, massage, physiotherapy, acupuncture, radiofrequency treatment, orthopedic, chiropractor, neurologist and probably many more that I can't think of right now.

In 2012 I went to see dr. Stokke in Oslo. I had no high hopes. I had learned by now that I should not get excited and think that someone would find my injuries. Seeing this wonderful man is the best decision I have made in my whole life. Finally, someone believed me, he found my injury! When he looked at the pictures he took of my neck, he asked me, "were you in a car accident at 11-12 years old?". I sat quiet for a while, I had forgotten about the accident, but now I remembered it clearly. The tears came pouring out of my eyes. It was as if all the pieces of my life fell into place. I had been in a car accident! 

The pictures from Dr. Stokke unfortunately did not help my case. I was laughed at when I showed the medical report to NAV (Norwegian Labour and Welfare Service) when I applied for AAP (work assessment allowance). A former GP told me not to show the report to the specialists I saw. The injuries dr. Stokke found, does not exist here in Norway. People with neck injuries don't get any medical help and Norway does not recognize Atlantoaxial instability (AAI) as an actual injury even though the World Health Organization (WHO) and many other countries do. You stand alone in an ongoing storm that never ends, where they tell us that we are lazy, imagining the pain and everything is "in your head". In the recent years, there was been months without any income. 

I gave up a while, I did not know who to turn to. It's a big jungle to navigate in on your own, without support from either professionals or specialists.

After fantastic help and support from my GP in Skien and a lot of understanding and love from employees at NAV, I now thankfully recieve AAP.

In early 2016, I heard about something called Upright MRI. This is very expensive. Huy and I saved up some money, my parents helped out and a very kind woman I know, helped us with money too. We traveled to Germany and dr. Andreas Förg. It was a wonderful experience for me. He told me that I have atlantoaxial instability and scarring and outgrowths on the dens-axis. When we arrived back at the hotel that day I had a hysterical breakdown because I felt so incredibly betrayed by Norwegian healthcare system. All the emotions came at once. I always thought I was going to walk on a cloud of happiness when I got these answers, but I just felt anger. A large, dark cloud of anger.

When we arrived back at the hotel that day I had a hysterical breakdown because I felt so incredibly betrayed by Norwegian healthcare system. All the emotions came at once. I always thought I was going to walk on a cloud of happiness when I got these answers, but I just felt anger. A large, dark cloud of anger.

I cried and cried. Dr. Stokke was right all along.

I wanted a second opinion, and a great neurosurgeon from the US named dr. Faheem Sandhu agreed on these diagnoses.

After reading about a Swedish woman who had similar injuries like me, I was tipped off about dr. Gilete, a surgeon based in Barcelona. He looked at my Upright MRI pictures and I went to see him in March 2017. He confirmed that I also have Craniocervical instability and he recommends fusion of C0-C4.

My condition will only get worse, surgery is the only solution for me. This is not something that heals itself, nor something I can live with.

Watch video