Last year was the most intense year in our lives. The year with the most important event. Before our daughter Nynke (20) was operated on last year, she had been ill for five years. Symptoms included pain, balance disorder, high heart rate, muscle weakness, no energy, and sensitivity to light and sound. As a result, she spent an average of twenty hours a day in bed in a dark room. During our search for a diagnosis, three rehabilitation clinics, six hospitals, and sixty doctors and therapists were visited.
Our daughter was referred to a neurosurgeon in the Netherlands in 2020. After studying the imaging, they said there is a large rotational range of motion between C1 and C2. Nynke has since been in the first group in a study of occipital cervical fusion surgery. Due to the complicated diagnosis and treatment and everything that comes with it, but unfortunately, also due to delays due to COVID-19, the study has unfortunately not started yet. It is expected that ZonMw, the Dutch organization for health research and care innovation, will provide clarity regarding the requested financial resources for this study in the foreseeable future.
Because our daughter’s health deteriorated and the hospital could not clarify when the study would start, we traveled to a medical center in Barcelona on New Year’s Eve 2021. Atlanto-axial instability has been confirmed separately by two neurosurgeons. In addition, our daughter also had clinical and radiological criteria for craniocervical instability. She was also diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS).
Nynkes symptoms are in remission or even gone after surgery on June 3, 2022. Light and sound intolerance is completely gone. Just like the dizziness, headache, nerve pain, and nausea. We no longer must go to the ER at night because she was so sick, throwing up, and in so much pain.
POTS no longer occurs when sitting, standing, or walking. Our daughter started on the treadmill under the guidance of the physiotherapist last month and her heart rate remains normal. Post-exercise recoil, PEM, is also reduced. She still rests in the afternoon.
We are lucky that our daughter was still registered at the hospital in the Netherlands. The six months post-op CT scan could therefore be made here. For this, we did not have to travel back to Barcelona like many other patients. Both doctors are satisfied with the CT scan. Bone growth is clearly visible, and our daughter has started to reduce the hard neck collar.
Because it doesn’t feel right to me that the health insurer will not reimburse the operation, we have submitted a formal complaint to the Dutch Disputes Committee (SKGZ). Care should be accessible to everyone and should not depend on how much money you have in the bank or on crowdfunding. The SKGZ has contacted the health insurer again. The ironic thing is that the file handler at the health insurer is the same person who handled my father’s file in 2018 because the health insurer did not want to reimburse his healthcare costs, which were also incurred abroad. Lawyers then ensured that all healthcare costs were ultimately reimbursed. The process via the SKGZ or perhaps via lawyers via the court will take some time. The scientific evidence is unfortunately wafer thin and if the information is available, I would like to hear it.
Chairman of the Nynkes Kans Foundation. But above that father of Nynke.
