It all started when Kim was 18 and experiencing a lot of headaches. Not a normal headache, but one that originated from the back of the head. At the time Kim was still in school and had a busy social life, she thought the headaches were just part of it. Over the years, her headaches became more and more frequent to the point where there wasn't a day without a headache. She had been to the primary care doctor many times and had even seen an ENT doctor, but they all said it was "all in her head" and there was nothing wrong with her.
When Kim was 22 and in her first year of PABO, she suddenly became hard of hearing. Because of this sudden onset, she went to an audiological center; they found it very suspicious. Within a month she had completely lost her hearing on one side and on the other side only heard 30%. The audiology center insisted on an MRI test.
The doctors initially did not know what they saw on the MRI and referred Kim to the hospital in Tilburg. Here, a biopsy was done through the nose and soon the diagnosis of chordoma was established. The tumor was very close to the brain stem and the risks of surgery were severe.
For the first few years, Kim, her husband Daan, and her family did not know exactly what a chordoma was. All she could find on the Internet was that a chordoma was a rare tumor, not malignant but invasive. She also found a fellow patient in Friesland, but she was in very bad shape, which scared her. The lack of information made it a very uncertain time. Now there is so much more information and she is learning every day. It's very comforting knowing that so many people are now doing research and that more and more treatment options are available for when the tumor might come back.
Kim has been operated on a total of four times, each one was a very long surgery and the risks were significant each time. The surgeries went very well, albeit she became deaf in her left ear. A small piece of the tumor remained near the brain stem, as it was too dangerous to remove. The year after the fourth surgery, radiation followed. First Kim was supposed to go to Switzerland for proton therapy, but they thought the risks were too great, so she ended up at Erasmus MC in Rotterdam where she was radiated twice a day. Every year Kim gets an MRI for monitoring and fortunately, since 2009 the tumor has remained stable.
Kim does not live from scan to scan, but her and her husband’s life is based on the tumor since she, unfortunately, has not been able to finish her education and she cannot work either. Kim and Daan have also decided not to have kids. They are enjoying each other and "seizing the day”. Kim and Daan met in a unique way. Daan was diagnosed with a pituitary tumor at age 24, and when Kim received her diagnosis, they were put in contact through a mutual friend, thinking they could support each other. The first few years the contact was over email, and then Daan came to visit Kim in the hospital and there was an instant click!
Because of the radiation treatments, Kim's pituitary gland has started to function worse and she needs a lot of medication to compensate for its function. It is all very hard, but as long as the tumor does not grow, she is happy.
Kim and Daan have been to a few meetings for chordoma patients and their loved ones. It strengthened her to see that she was not alone. At the contact day in Leiden, Kim was even a speaker. She has written a book titled ‘Het zit tussen je oren’ in which she speaks candidly about her experience with chordoma. At the time, the primary care doctor indicated that it was all in her head, and after everything she had to endure, she could get quite angry about that at times since it actually turned out to be in her head, but in a literal way, so in a slightly different way than the family doctor believed.
A lot has changed in the past 17 years. Whereas Kim initially thought that if the tumor starts growing again there are no more treatment options, she now sees that through all the research efforts over the past 15 years, there are now several options to treat a recurrent tumor. Where she initially dared not look ahead, Kim and Daan are now planning for the future. The enormous scientific progress offers hope, knowing that there is a team of chordoma specialists in Leiden gives peace of mind, and the knowledge that you are not alone strengthens you.
Tell us your Uncommon Story
Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.