Patient (57) finally feels heard after years of searching

"My brain is functioning properly again"

When in 2014 Monique Broer went to see her GP for persistent colds, she could never have imagined that her life would soon take a dramatic turn. “It didn't appear to be serious at all at first," says Monique. After the ENT (ear, nose and throath) doctor removed a few polyps, she felt much better. "I could breathe again and I felt great. I was just as energetic as I had always been." 

Anxiety and fear

However, her initial enthusiasm quickly turned into anxiety and fear when Monique received a call from the hospital. “A tissue culture on the polyps showed that I had esthesioneuroblastoma." Esthesioneuroblastoma is an extremely uncommon malignant tumour of the upper nasal cavity. While recovering at home after surgery, Monique developed an abscess on her brain and suffered an epileptic seizure. Upon being examined in the hospital she was found to have an infection for which she received IV treatment during the next three months. Whether that would rid Monique of the bacteria was a matter of wait-and-see. 

Intensive radiotherapy

After six weeks, Monique started on an intensive radiotherapy programme. "I received a total of 33 radiotherapy treatments." It was a difficult time, in which Monique also became highly sensitive to overstimulation. "Sound affected me particularly hard. I also had tremendous difficulty concentrating, was extremely tired and had trouble responding when people spoke to me. I couldn’t always grasp what they were saying and many times I couldn’t find the right words. It was very distressing." 

Little progress

Monique made little progress over the next two years. “I felt that no matter what I said, it fell on deaf ears." For example, the ENT doctor sent her to a neurologist, who advised her to go to a rehabilitation centre to learn how to deal with her disabilities. Monique: "I studied therapeutics myself and was only too aware of the fact that rehabilitation centres focus on managing symptoms rather than addressing the cause." 

From a 2 to an 8

In October 2017, Monique was made aware of the Functional Neurology Institute in Lisse, where it was explained to her that there were two possible causes for her complaints. The nose sits exactly level with the prefrontal lobe, which is responsible for such things as cognition, memory and alertness. “The prefrontal lobe might have been damaged when the tumour was removed or it might have been disrupted or damaged by the radiotherapy despite it being a targeted and tunnelled treatment." After her first visit, Monique’s condition improved considerably. "During my first consultation in Lisse, my professional specialist qualified my situation with a score of 2 out of 10. During my latest visit he gave me an 8. And that's what I feel too. Although I still have to keep the brakes on, I feel so much better now. I really have to pace myself, but I have been able to push my limits. Now when I am feeling well, I don’t have any cognitive problems. I can relate quickly, I am alert and I have no trouble communicating. I am so glad my brain is functioning properly again." 

Pace well

Monique has learned the hard way to pace herself. "I know I have to be careful not to be overstimulated. Social activities, especially together with several people in a public space, like a restaurant, are stressful. It takes me a couple of days to recover from all those stimuli. I limit myself to routine chores then and make sure I get enough rest." The past several years have left their mark on Monique. “My condition is not visible to outsiders. They can’t see anything wrong with me. And it’s not always easy to stay cheerful and keep my difficult moments to myself, especially because I have to miss out on so many things. Nowadays, Monique visits the Functional Neurology Institute only a few times a year. “That’s just to keep a finger on the pulse and when I experience a relapse." 

Downright positive

Monique hopes that fellow sufferers will also make their way to the Functional Neurology Institute. "My professional specialist is very competent and a good listener. He is also very perceptive. For instance, when I do my exercises at the institute, he immediately notices the slightest change in my eyes or in my ability to coordinate. It’s a relief in any case to meet someone who is able to pinpoint exactly where it ‘hurts’. In the mainstream medical circuit they were unable to place my complaints and I often felt like I was talking to a brick wall." Monique’s appreciation extends not only to the professional specialist, but to the entire team at the Functional Neurology Institute. “They are all friendly, engaging people. No wonder the atmosphere is so pleasant there."

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