Condemned to a life in a wheelchair – treatment in the US changed everything

Lorry driver Simen Gangnes from Skarnes was the type who never went to the doctor. But on 17 December 2020, he woke up with severe pain in his toes. Within a couple of days the pain spread to the whole leg.

He took an X-ray of the leg, but there was nothing that could explain the excruciating pain.

– The pain was completely unbearable. So I mostly lay inside. If I was outside, I could pass out just because it was a little windy.

In the video at the top of the case, you can see how Simen is doing today!

– After two or three hours out among people, I was completely finished and had to stay inside for four or five days without eating or talking to anyone, says Simen Gangnes to TV 2 helper.

From being a healthy and fit 27-year-old who enjoyed fishing, within a few months he was confined to a wheelchair and dependent on strong painkillers.

WORSE THAN IT LOOKS LIKE: You see that the leg hurts, but the pain is worse with CRPS.  Photo: Private

WORSE THAN IT LOOKS LIKE: You see that the leg hurts, but the pain is worse with CRPS. Photo: Private

With the help of a very active GP, he was able to start the search for the diagnosis, but right from the start he relied on problems with the public health system. Akershus University Hospital (Ahus) had a waiting time of a full five months for an appointment for examination at the pain department.

– When patients are referred to the pain outpatient clinic, we follow the recommendations in the prioritization guide for pain conditions from the Norwegian Directorate of Health, writes Else-Marie Ringvold, head of the anesthesia department at Ahus.

This guide prioritizes people with immediate acute, severe pain. Here, the patients will have an appointment after four weeks.

READY FOR TREATMENT: Simen Gangnes was confined to a wheelchair when he went to the USA for treatment.  Photo: Private

READY FOR TREATMENT: Simen Gangnes was confined to a wheelchair when he went to the USA for treatment. Photo: Private

– When it comes to patients with more chronic pain courses, other deadlines apply. In this case, a passage of time was described which had already passed four weeks at the time of referral. Therefore, the patient was prioritized according to the guidelines and received a waiting time of approx. five months, as he describes, writes Ringvold.

Gangnes was in extreme pain and therefore chose to spend NOK 60,000 on treatment and diagnosis at private clinics in Norway.

As a result, he found out after just two months that he had complex regional pain syndrome (CRPS), also called the “suicide syndrome”.

After five months, he received the same diagnosis at Ahus.

Facts: Complex Regional Pain Syndrome (CRPS)

The syndrome usually affects an arm or a leg. Typical symptoms are intense, burning, cutting, sharp or aching pain together with swelling, change in skin colour, change in temperature, abnormal sweating and hypersensitivity in the area in question.

The condition most often develops within 4–6 weeks after an injury.

Relatively rare syndrome, only about 2,000 new cases a year. Four times as many women as men are affected, and most patients are in the 50-70 age group.

CRPS is divided into two subgroups: Type 1 without nerve damage and type 2 which has definable nerve damage.

Physiotherapy, cortisone courses or treatment with electrical impulses (TENS) are among the treatment methods used. In rare cases, the patient can have a spinal cord stimulator inserted, which can help to control the pain.

Source: Large medical encyclopedia, Haukeland hospital, nhi.no

TRUCK DRIVER: Simen Gangnes dreams of returning to a permanent job in the truck.  Photo: Glenn Aaseby

TRUCK DRIVER: Simen Gangnes dreams of returning to a permanent job in the truck. Photo: Glenn Aaseby

Drugged

In the same way as CRPS sufferer Kari Olstad that TV 2 wrote about earlier, Simen Gangnes was primarily offered painkillers at Ahus and Ullevål.

– I saw a physiotherapist seven times. But was told that there was no point in exercising until the pain had subsided. I did not receive any follow-up other than that from the physiotherapist, explains the 27-year-old.

The pain got worse and worse, and it spread to his hand. With extreme pain in his hand, he had to stop using crutches and was confined to a wheelchair.

Finally, the pain became so unbearable that he could not sleep:

– The only time I was able to sleep properly during a week was when I was put to artificial sleep with the help of intravenous lidocaine and ketamine. Then I slept for six hours. But eventually that didn’t work either, says Gangnes.

At his worst, he took seven or eight drugs three times a day. Among other things, medical cannabis and ketamine. Ketamine is 100 times more potent than morphine, according to the Norwegian Medicines Handbook.

Failed rehabilitation

In August last year, Gangnes was sent for six weeks of rehabilitation at Unicare Steffensrud at Bøverbru near Gjøvik. Here he was to receive follow-up from a multidisciplinary team with a doctor, nurse, physiotherapist, exercise supervisor/sports teacher and occupational therapist.

He saw a physiotherapist and received acupuncture, but according to Gangnes the treatment did not help.

– They asked me to walk on my feet. Since I do as I’m told, I did. But that only triggered the pain and caused it to spread from the knee up to the hip. I was in more pain after six weeks at Steffensrud than when I got there, says Simen Gangnes.

– It is regrettable and sad to read that the patient referred to here has not experienced an increased quality of life after completed treatment and rehabilitation, writes general manager Ann Kristin Rebne at Unicare Steffensrud to TV 2 help you.

Unicare has a general attitude of not exempting its healthcare personnel from their duty of confidentiality. So even though Gangnes has exempted them from the duty of confidentiality, they still will not comment specifically on the matter.

In general, Rebne writes: “According to our medical specialist in physical medicine, CRPS is one of the most difficult and more complex pain conditions for patients in general…. Early treatment is important to avoid long-term and chronic ailments”.

Completed treatment

Ullevål Hospital had stopped treatment before Gangnes went to Steffensrud. In November last year, Ahus also ended the treatment.

– They said I had tried what they have to offer.

Else-Marie Ringvold, head of the anesthesia department at Akershus University Hospital (Ahus) answers to TV 2 help you:

– Operations at the pain outpatient clinic are organized to be able to assess pain patients and initiate the necessary treatment, possibly after testing different alternative treatment methods. The pain clinic is not a place where patients receive comprehensive and regular treatment over time. If patients need physiotherapy, the treatment must continue outside the hospital.

ELECTRICITY: With a so-called ARPWave machine, Simen gets electric shocks into his muscles.  This is used to get the affected body parts moving again.  Photo: Private

ELECTRICITY: With a so-called ARPWave machine, Simen gets electric shocks into his muscles. This is used to get the affected body parts moving again. Photo: Private

Help in the US

Last autumn, TV 2 told you about Emma Reiakvam (21), who went to the Spero clinic in Arkansas to get treatment for CRPS. She collected almost NOK 700,000 at Spleis to finance her stay.

– She was the one who inspired me the most to try. When I saw her on TV, I thought I must try this too, says Simen Gangnes.

He also managed to finance large parts of the treatment at the controversial clinic via Spleis collection.

NORWEGIAN TRIO: Simen Gangnes, Kari Olstad and Emma Reiakvam are together at the Spero clinic, the picture was taken while two of them were still in wheelchairs.  Photo: Private

NORWEGIAN TRIO: Simen Gangnes, Kari Olstad and Emma Reiakvam are together at the Spero clinic, the picture was taken while two of them were still in wheelchairs. Photo: Private

Since he only had a tourist visa, it was absolutely necessary to finish within this three-month deadline. As a result, it was very tough training with a lot of pain.

His trainer had a background in the US Army and believed that with pain pain must be banished. Eventually, Gangnes got out of the wheelchair and took his first steps. Then there were more.

– I had an agreement with the coach that I would leave after four weeks. So on the day after four weeks I left home for the clinic. It was still insanely painful, but it wasn’t so bad that I fainted, says the tough guy, who caused a stir at the Spero clinic.

– They were quite shocked when I came walking to the clinic on Monday. I had driven home in a wheelchair on Thursday.

Watch the incredible transformation in the video window above.

Fact: The Spero Clinic in Arkansas

Small clinic started by chiropractor Dr. Katinka van der Merwe with 35 employees who receive 12 new patients every week. The vast majority of these suffer from CRPS. The professional staff consists exclusively of chiropractors.

Just like other CRPS treatment, they get the patients moving, but otherwise they have their own treatment plans. Among other things, the use of electrical stimulation of the legs and arms with the ARPWave machine, oxygen therapy, cold laser treatment, etc.

The forms of treatment lack scientific studies showing that they work. The Spero clinic says this is because, as a small clinic, they do not have the resources to carry out research into the treatments.

BEST FRIEND: Simen Gangnes today manages to play with the dog Willie.  Watch the video above to understand how his life has changed.  Photo: Glenn Aaseby

BEST FRIEND: Simen Gangnes today manages to play with the dog Willie. Watch the video above to understand how his life has changed. Photo: Glenn Aaseby

– During rehabilitation in Norway, you also tried to walk, but then the pain spread. Why didn’t it do that at the Spero clinic?

– I think it has to do with the expertise in how to train away the pain. At the Spero clinic, electricity is used to stimulate the muscles when you train to walk, says Simen Gangnes.

The ARPWave machine is popular among sports stars to recover faster from injuries. At the Spero clinic, it is used to give weak shocks to the nerve fibers in connection with training the affected body part.

– It costs NOK 200,000, but should have been covered by NAV just like a wheelchair. Because it prevents relapse, says Gangnes.

But there is only a small research report from Hawaii about the ARPWave machine, and a lack of solid research documenting its effect means that it does not enter the Norwegian healthcare system.

Needs scientific evidence

– It is gratifying that the treatment in the USA has given a good result, and we would like to hear more about what the treatment entails and how it is organised, writes Else-Marie Ringvold, at Akershus University Hospital.

She believes that certain specific pain syndromes “are so rare that it is not considered appropriate to build up a large treatment apparatus for a small group of patients in Norway. In addition, there is a large private health industry in the USA that has built up offers that there are fewer opportunities to provide in Norway.”

In plain language, this means that it is easier to get continuous treatment when you pay for it yourself. With a cost of a minimum of NOK 700,000 at the Spero clinic, you can receive treatment from 9 a.m. to 6 p.m. five days a week.

TV 2 helps you has been in contact with the leading experts in Norway on CRPS, and they are skeptical about the treatment at the Spero clinic because they exclusively use treatment methods that are not supported by research.

They also do not have an interdisciplinary treatment plan, but rely exclusively on chiropractors. This means that the scheme is not suitable for everyone. TV 2 helps you has received tips about patients in Norway who have not been helped by the treatment, but has not been able to contact them.

The Spero clinic states that eight out of 12 people experience becoming symptom-free. TV 2 helps you cannot verify the figures because there is no research on the clinic’s results. Chiropractor Katinka van der Merwe, who founded the Spero clinic, explains that research is expensive and difficult to get funded for a small clinic like Spero.

– Living proof

When TV 2 helps you visit Gangnes at Skarnes, he kicks football and plays with his dog Willie. It’s hard to believe he was in a wheelchair just a few months ago.

He thinks that the Norwegian healthcare system places too much emphasis on research.

– I feel that I am living proof that the treatment at the Spero clinic works. Norwegian doctors should check a little more what this is. Maybe take a trip there, he smiles.

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