Last summer she mostly lay in bed. After almost a year at a chiropractor clinic in the US, she no longer needs a wheelchair. This winter she managed to run for the first time in over three years. – I am much better, but still not completely rid of the pain, says Emma Elise Nilsen Reiakvam. Now the 21-year-old from Valle in Ålesund is going back to the chiropractor clinic The Spero Clinic in Arkansas for more treatment. – I want to finish, and now it’s the last push. Have to borrow more money But it comes at a price. The family expects to pay a total of NOK 2 million. Because it has not been documented that the treatment helps, it is considered an alternative. As a result, she cannot cover any of the expenses. – We have already borrowed NOK 750,000 and have an open Spleis. We’ll probably have to borrow more, says mum Stine Nilsen. Mum Stine Nilsen is moved by seeing her daughter’s progress. Photo: Silje Thalberg / news Not satisfied with the treatment in Norway After sustaining an injury to her foot, Emma developed complex regional pain syndrome, CRPS. Because of the strong pain, the disease is also called the “suicide disease”. Every year, between 500 and 1,000 Norwegians are diagnosed. Most people get well before a year has passed, but some do not get well. This is what Emma’s foot looked like after she melted a door over her ankle. No fracture was found, but the pain did not go away. Photo: Private Emma and the family made the decision to go to the USA last year, despite the doctors’ advice. The family was not satisfied with the treatment Emma received in Norway. To get rid of CRPS, you have to use the part of your body that hurts. – Before she left, she had an appointment with a physiotherapist and a psychologist a week. You will not recover from it. At the clinic in the US, she receives up to eight treatments every day and they last from morning to afternoon, says mum Stine Nilsen. Complex regional pain syndrome (CRPS) It is a relatively rare condition that usually affects an arm or a leg. Typical symptoms are intense burning, cutting or aching pain together with swelling, change in skin colour, change in temperature, abnormal sweating and hypersensitivity. The pain is experienced as much stronger than one would expect from the injury. The condition can also spread from where it originated to nearby areas of the body. Most cases result from an acute injury in the form of infections, broken bones, sprains or surgical intervention, or it can be triggered by a stroke. The cause of CRPS is not fully understood. The condition can be caused by disturbances in the sympathetic nervous system, the part of the nervous system that is not controlled by the will, and which controls pain impulses, blood flow and sweat glands. Physiotherapy, cortisone courses or treatment with electrical impulses (TENS) are among the treatment methods recommended. In rare cases, the patient can have a spinal cord stimulator inserted, which can help to control the pain. Source: NHI.NO More people want to do as Emma At the fundraising service Spleis, there are several CRPS patients who collect money for a stay at the same clinic that Emma uses. Hans Erik Paulsen (51) got CRPS after being operated on after an ATV accident in 2013. – There is nothing in Norway that can give me quality of life and a functioning life, says Paulsen, who lives in Gratangen in Troms. Funeral gown became wedding gown Painkillers no longer have any effect for Hans Erik Paulsen. He has to breathe through the bouts of pain. Photo: Privat The pain is so intense that he considered going to Switzerland to get help to take his own life. – Because I have Sami origins, I wanted a cardigan to be buried in. But instead I found love in the sewing room, and the cardigan became a wedding cardigan, says Paulsen. The wife discovered the offer at the Spero clinic, and now he hopes that the collection will enable him to receive treatment there. – It is my last hope. – Not being taken seriously For Jamila Ayad Al-Rikabi (25), an injury on the handball court as a 14-year-old was the start of nine years of intense pain. She, who has also talked about the disease in VG, describes it as burning her foot. – I feel that I am not taken seriously by the Norwegian healthcare system. I am told that I have to learn to live with the pain, but that is not possible. I want to go to the Spero clinic because I see that it works for others, she says to news. But most fundraising campaigns fail, and Jamila has only managed to collect about NOK 50,000 of the NOK 700,000 the treatment costs. Emma took the tube out of her nose on 19 May. Emma receives oxygen treatment at the Spero clinic. Emma’s leg. CRPS causes severe pain combined with swelling, changes in skin color and hypersensitivity. The group from Norway has improved much at the Spero clinic: Kari Olstad, Simen Gangnes and Emma Reiakvam. In February, Emma ran for the first time in 3.5 years with the therapist Bryce. Emma receives oxygen treatment in combination with exercise. Emma practices raising her arms above her head in the fourth week of treatment. The reunion with the family became strong when Emma returned from the USA after the first round of treatment . Photo: Marius Åmbakk Bjørkedal / news – Unethical Audun Stubhaug is professor and head of the department for pain management at Oslo University Hospital, and is one of the foremost experts on the disease. The course of treatment for CRPS patients in Norway In Norway, CRPS patients are offered evaluation and treatment in multidisciplinary pain clinics at the hospital or at regional specialist services. Regular treatment over time takes place in the municipal health service. Patients can receive follow-up from physiotherapists, occupational therapists, psychologists and social workers. The offer in the municipal health service varies depending on which country you live in. It is possible to stay at rehabilitation centers such as the Cato center and Unicare Steffensrud He asks CRPS patients to go to the Spero clinic. – This is a small, private chiropractic clinic that has no documented results. It is a big financial burden to travel to the USA alone, and I consider it unethical to recommend an undocumented, expensive treatment, says Stubhaug. – But Emma and others say that they are much better? – The beauty of our public healthcare system is that you have the right to complain, and then you may get a new and better offer than what you have received, says Audun Stubhaug. Photo: ES Gjerde / OUS – It’s really great that patients get well. But the offer that is free in Norway is a much broader offer, says Stubhaug, who believes that the patients’ own efforts should also have much of the credit for their recovery. He believes that the popularity of the clinic is temporary, and believes that the offer in Norway is in line with the best institutions abroad. – But one can always ask questions about whether the patients receive enough treatment, and whether it is adapted well enough to each individual case. “Toss balls in a complex system” In 2018, the Ministry of Health and Care Services asked the Norwegian Directorate of Health to start a consultation on a new course for patients with long-term and complex pain conditions. The deadline is set for 22 October. The work has revealed that pain patients “tend to become pawns in a complex system where interaction between the actors is not good enough”. there is an undesirable variation in the evaluation and treatment offered to the patient group It takes an average of 8–9 years before patients with long-term and complex pain conditions come to an interdisciplinary evaluation in a pain clinic Claims that 84 percent recover According to Katinka van der Merwe, who runs the Spero clinic , they have treated around 800 patients. They come from all over the USA, but many are also from Europe. The clinic uses many different treatment methods. Examples are vagus nerve stimulation, laser treatment, pressure wave treatment, oxygen treatment, detox and various forms of exercise. The clinic has no guarantee that the patients will get rid of the pain. – 84 percent of the patients reach the goals they have set for the treatment. It’s not just about getting rid of the pain, but being able to live a normal life, says the chiropractor in an interview with news. It is not possible to review the speech as there is no research on the results of the clinic. Simen Gangnes and Kari Olstad, who were at the clinic at the same time as Emma, are out of their wheelchairs today. Photo: Privat Meiner The Spero clinic should be recognized The ARP machine delivers electric shocks into the muscles to help the body parts that have been affected get moving again. The machine is rented for NOK 40,000 for one year. Photo: Silje Thalberg / news What the treatment in Norway and at the Spero clinic have in common is that it focuses on movement and exercise. Emma Elise Nilsen Reiakvam does not rule out that she could have recovered in Norway, but mother Stine Nilsen would like the Norwegian healthcare system to look into the Spero clinic and what they do there. – We have seen countless examples of people who have entered in a wheelchair, and jumped out again. It must be something they are doing right, says Nilsen.
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Desperate pain patients go abroad for alternative treatment – news Møre og Romsdal – Local news, TV and radio
