The case in summary Henrik Nærland (27) experienced severe chronic pain in his ear canals and around his jaw for seven years before he was diagnosed with Eagle Syndrome. He was initially misdiagnosed with an ear infection and his pain continued to worsen. Henrik missed an offer to manage the chronic pain and felt that the public healthcare system lacked knowledge about his condition. He finally chose to go to a private clinic, where after a short time he was diagnosed with Eagle Syndrome. After a successful operation, Henrik is now on his way to a pain-free and normal life, but he calls for more knowledge about, and a standard procedure for, patients with Eagle Syndrome. The summary is made by an AI service from OpenAi. The content is quality assured by news’s journalists before publication. It started with migraines. Pain in the ear canals and around the jaw. He was told that the pain was due to an ear infection and was given ear drops to use for 14 days. Henrik was to return after 14 days if the pain did not subside. It would take almost seven years before Henrik got an answer. It was never an ear infection. It was the start of a hell of pain that would take away much of his 20s. What is Eagle Syndrome? Photo: Evidia Ålesund Eagle syndrome is a rare and painful condition. It is uncertain how many people are affected by the syndrome in Norway. Eagle Syndrome occurs when an elongated bony tip (styloid process) in the skull grows down to the tongue bone and causes recurrent throat pain or foreign body sensation, throat discomfort or facial pain. Additional symptoms may include neck or throat problems with radiation to the ear on the same side. Many may have elongated styloid processes, without other symptoms. Then you don’t have Eagle Syndrome. The cause of Eagle Syndrome is unknown. Diagnosis is made by clinical examination and X-ray examination. If the styloid processes are surgically removed, they do not grow back. Sources: Nils Petter Fossland, head of department for maxillofacial surgery at St. Olav’s hospital Nils Heim, doctor and specialist in facial and maxillofacial surgery in Germany. A dark room A life filled with great pain, painkillers, fatigue, migraines, sick calls, and a very limited social life. The pain has varied for periods, but has steadily gotten worse. – I haven’t had a single day without pain during the past seven years, says Henrik. The paracetamol eventually stopped working, and he was given stronger painkillers. Still, this was not enough. Henrik’s life has at times been chained to the bed in a dark room with minimal sound. Photo: Privat On the worst days, the pain was so great that Henrik was locked to the bed in a dark room with minimal sound. – I was on the verge of giving up. – You feel that you are trapped in your own body, that you are locked in a burning room. Pure hell, quite simply. Manageable pain every now and then On days when the pain was manageable, Henrik was allowed to do “normal” things. Go to work. Exercise. Hike. Fishing. Attach. – Completely normal things that everyone does, really. And I could be social too. But I quickly got tired. On better days, Henrik could do “normal things” to a limited extent, such as fishing, going on trips and being social. Photo: Private Photo: Private Photo: Private Photo: Private And it was expensive to meet friends. – I had to limit it a lot. I couldn’t take it all the way out. Then I lay for several days straight afterwards. Eagle syndrome is a rare and painful condition. It is uncertain how many people are affected by the syndrome in Norway. Eagle Syndrome occurs when an elongated bone tip (styloid process) in the skull grows down to the tongue bone and causes recurrent throat pain or a foreign body sensation, throat complaints or facial pain. Additional symptoms may include neck or throat problems with radiation to the ear on the same side. Many may have elongated styloid processes, without other symptoms. Then you do not have Eagle Syndrome. The cause of Eagle Syndrome is unknown. Diagnosis is made by clinical examination and X-ray examination. If you operate on the styloid processes, they do not grow back. Sources: Nils Petter Fossland, head of department for jaw and facial surgery at St. Olav’s hospitalNils Heim, doctor and specialist in oral and jaw surgery, as well as plastic and aesthetic surgery in Germany.Graphic: Nils Heim Psychological help against pain Henrik says that he have missed an offer to manage the chronic pain. Doctor and author, Kaveh Rashidi, describes pain as a physical and psychological phenomenon. – Regardless of whether you experience something purely physical, as if you cut yourself with a knife, you will be a psychological component in it. It is your brain that experiences the pain, and your psyche that feels the pain. Doctor and author, Kaveh Rashidi, describes pain as a physical and psychological phenomenon. Photo: Snorre Tønset Rashidi says that he understands that it can be experienced as a defeat for a patient to be told that the pain they are experiencing is psychological. – It’s about the fact that things that are physical often get better with psychological help. The research results on the effect are variable, but it can still be a useful tool for managing the pain, says Rashidi. Went private After visiting several different medical specialists who believed that the pain Henrik experienced was psychological, and what could feel like endless pain, Henrik was on the verge of giving up again. Before he and his partner decided to go to a private clinic. September last year. After 45 minutes at the private doctor, he got the answer he has been waiting for for almost seven years. The pain Henrik had experienced was not psychological, or a chronic ear infection. It was due to Eagle Syndrome. The X-rays of Henrik show the elongated bone tips. Photo: Evidia Ålesund The X-rays of Henrik show the elongated bone tips. Photo: Evidia Ålesund – My roommate started laughing. Finally he had an answer. Something he could explain to himself, to family, friends, work and colleagues. – It was a bit surreal. Difficult to meet everyone Henrik tells of an experience of being met by the public healthcare system with little knowledge of the condition. According to him, there are several people in his situation who tell of similar experiences and who struggle to be diagnosed. – We are in continuous education and improvement, so that the goal is for everyone to meet and have a good impression of the healthcare system. That’s what head of department in the department of jaw and facial surgery at St. Olav’s hospital, Nils Petter Fossland, says. Nils Petter Fossland, head of department for jaw and facial surgery at St. Olav’s hospital in Trondheim, hopes that everyone will get a good impression of the public healthcare system. Photo: Private – An experience of not being met with understanding and knowledge is not good. – But it is clear that in a system as large as it is after all, there will be some who feel that they will not be met with that understanding, says Fossland. – Over 2,000 rare diseases Nils Heim is a doctor and specialist in oral and maxillofacial surgery, as well as plastic and aesthetic surgery in Germany. He is an expert on Eagle syndrome, and says that it can be difficult to find out the diagnosis among all rare diseases. – There are approximately 2,000 registered rare diseases, and I know maybe ten of them. So it’s just luck to find something. Nils Heim is a doctor, surgeon and expert on Eagle Syndrome. He believes that nobody can be blamed for the fact that it can take a long time to find the cause of rare diseases. Photo: Nils Heim / Nils Heim Heim describes Eagle Syndrome as difficult to diagnose, if you don’t know what to look for. – But I don’t think you can blame anyone, because you can’t know everything. – Extremely many emotions After a few weeks, the date for the operation ticked in. Henrik, who lives in Lyngdal, was referred to St. Olav’s hospital in Trondheim. – Then there was an extreme amount of emotion. – Perhaps this is what will change everything, Henrik remembers thinking. Fortunately, the operation was successful and Henrik is now well on his way to a normal and pain-free life. Wants a change But he feels that he has been alone and has done his own research on where he should go for further help. He says that many are also long on the waiting list for surgery. – I was lucky to get a quick referral for surgery, but not everyone is. He calls for a standard procedure for patients with Eagle Syndrome. It is particularly important in the period following surgery. – I miss that very much. Henrik wants a better offer for patients with Eagle Syndrome. Photo: Privat / news Fossland confirms that there is no set procedure for patients with Eagle Syndrome. – You have to treat everyone individually. He states that there are few doctors in Norway who operate for the syndrome. – Which is fine as there are not many people in Norway who have to have surgery every year. Henrik looks back on the last seven years with hindsight. – If I were to turn back time, I would have done what I did when I got the diagnosis. It is simply going private. Published 02.08.2024, at 15.59
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