I have a remarkable story to share. Over 30 years ago, following double vision, a conventional chordoma was diagnosed near the brainstem. Despite that, there were no follow-up checks by the local hospital at that time. They literally said, 'It grows so slowly that there will surely be better treatment methods in 25 years.' I was 19 at the time.
For the next 28 years, I had no complaints and thus did not undergo any check-ups. However, in 2022, I began experiencing problems with my left eye. After several visits to an ophthalmologist, I was referred for an MRI, which in 2023 revealed the expected result: the well-known chordoma tumor had grown enormously and was causing pressure and danger.
After various international studies, I underwent surgery via the nose in January 2024, allowing for extensive debulking. Further examinations, including those of the circle of Willis, were so positive that on April 30th, I underwent an even more invasive operation, during which they went in through the skull and successfully removed the majority of the tumor. Because the remainder is located around the brainstem, removing more would pose too many health risks.
The final operation went miraculously well for me. Despite all the risks, I was off the ICU after 12 hours and back in my room. I was discharged after only 4 days and I now walk 5 km per day. I am extremely satisfied with this outcome and look positively toward further recovery. I know this is exceptional, and my only complaint remains a closed eyelid and local swellings, but hardly any paracetamol has been necessary.
I underwent two surgeries, and I have fully followed their advice. Every situation is unique, and therefore random online information has not been a guide for me.
Of course, I have an exceptional situation, with the diagnosis made 30 years ago. However, there are different types and different consequences... Do not postpone... Time is important, follow the advice of the medical teams... They have the experience to place every patient in the right medical trajectory.