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Four yogurts and two apples a day. Nothing else. That was all she ate, for 15 years, Ana Belén Gómez Conde. Anorexia entered her house shortly after getting married, when she was 27 years old (she is now 42) and she never left again. She stopped eating, going out and interacting with the world: locked in her house in Monterroso, a small municipality in Lugo, Belén was simultaneously dealing with this devastating disease and the lack of understanding of almost everyone around her: “No one understood me. Only my mother, only her, knew how to understand that if I didn’t eat it was not because I didn’t want to, but because she had an illness,” she recalls. Anorexia silently devoured her until she could not stand. She asked to die to stop suffering, but she wanted to live. So much so that she grabbed at the last straw she found on the other side of the country: an experimental treatment with deep brain stimulation, which was being tested at the Hospital del Mar in Barcelona to treat the most serious anorexia nervosa.
Dr. Gloria Villalba, a neurosurgeon at that center, has the first time she saw Belén recorded in her retina. “Her mother brought her by her hand because she couldn’t walk. And she told me: ‘This is my daughter, she is dying,’ the doctor recalls, excited, in a small hospital room. In front, Belén and her mother, Mari Carmen Conde, 66, nod silently. Words fall short to explain those days when the disease took everything away. “It was very hard. I saw that she was leaving this world,” her mother manages to say. Villalba details the ordeal: “When her daughter went to sleep, Mari Carmen watched to see if she was breathing so that she would not die of cardiac arrest. This mother went for years without sleep to monitor her breathing as if she were a baby.”
Belén was on the verge of death and the experimental procedure at the Hospital del Mar was her last chance. The therapy was not going to work miracles or cure anorexia, Villalba warned him from the first moment. But if it worked, it could help alleviate some symptoms, such as anxiety and depression, that often accompany anorexia. A previous study from the same hospital, with eight patients, showed that in half these symptoms improved after subjecting them to deep brain stimulation.
This technique, which is already used to treat Parkinson’s or obsessive-compulsive disorder and is being tested in other psychiatric ailments, consists of implanting electrodes in a part of the brain associated with the disease (in this case, the subgeniculate cingulate), and send continuous electrical impulses to modulate the activity of brain circuits that are not working well. The stimulation is adjustable and reversible because the electrodes are attached, through a cable, to a battery under the skin that can turn off, turn on or modulate the intensity of the electrical impulse.
“It is not known which part of the brain causes anorexia. It is thought to be a circuit more than an area. In our clinical trial we tested two areas of the brain [el núcleo accumbens y el cíngulo subgeniculado] and the subgeniculate cingulate worked better for us,” explains Villalba. In practice, he says, it is a neuromodulation, “because in a circuit, there are several parts and some activate it and others inhibit it.”
In the case of Belén, the subgeniculate cingulate was hypofunctioning and had to be stimulated, but, at the same time, other areas that were assuming their function should also be inhibited. Villalba explains that “in neurological diseases, instead of all parts of the circuit being proportional, there is one part that stops working and another that takes center stage. And that leads to bad things.”
The intervention is “an elegant surgery,” says Villalba: the entire skull does not have to be opened, but the brain is accessed through two small holes and the electrodes are placed with a robotic arm. The operation, however, is not without dangers; That is why patients must be selected so well and risks and benefits must be measured. “It has a 1% risk of hemorrhage, a 5% risk of infection and a 3% risk of recumbency.” [erosión del tejido donde está el implante]. But the probability that a patient with anorexia nervosa will die is 30%. Although the operation has risks, the disease itself overcomes them,” the neurosurgeon contextualizes.
Does not cure, but improves symptoms
The neurosurgeon reiterates, however, that this procedure “does not improve the disease, but rather some symptoms of the disease.” They minimize conditions such as obsession, depression or anxiety, she insists. “After placing the electrodes, the patient continues thinking the same as before: Belén continues thinking about calories. What changes is that you are less anxious, less depressed and this makes you allow things that were previously unthinkable due to depression and anxiety. You are more tolerant and that generates more peace of mind, you eat a little more, you are more cheerful…”, explains the doctor, who has written her doctoral thesis on this technique in anorexia. It is not, in any case, a procedure available to anyone with anorexia. The technique, still in the experimental phase, is reserved for people who are in a very serious situation, with a disease of many years of evolution, resistant to all treatments and without therapeutic alternatives.
It was not easy for Belén to get to the Hospital del Mar. Being from another autonomous community, with an experimental treatment and the patient in such a deteriorated state, Galicia rejected her referral for surgery. So, she and her mother settled in Barcelona, paying for the trip out of their own pockets. She registered in the city, rented a small apartment near the hospital, and they have been there for more than a year.
He had surgery in January 2023 and the procedure worked. “I knew again what joy was. Within weeks, she no longer had depression, migraines, or anxiety. I laughed again, I enjoyed moments, I wanted to walk, have a good time, go shopping, buy things. It was a radical change,” says Belén. He is better, but he is not cured. As Villalba warned him from the first moment, anorexia is still there, but he has already taken giant steps forward. “I can try everything, but eat things that have sugar or oil, well no,” she exemplifies, and affirms that she is less tired: “Before I couldn’t stand up and now I am able to walk kilometers.” According to the nutritionists who monitor her evolution, she has gone from ingesting 250 kilocalories a day to 1,800.
The patient has even improved, despite the setback she suffered in June, when the battery became infected and had to be removed for a few weeks: during that time, she noticed the blackout neuromodulation, but when they put the device back in last September, he recovered. “Belén is an example of the success that this procedure can have in some patients. But I insist: this is not for everyone,” Villalba reiterates again and again. For now, it is reserved for chronic and very serious cases. “Our help is for those who are going to die. Perhaps, the day we know more, we will advise it to more people. But this procedure, specifically, must be done with someone whose life is really in danger,” explains the doctor.
Knowledge is still limited. There are only 78 people with anorexia undergoing surgery worldwide, Villalba points out, and the results are variable. “Today, we do not know which is the best target (three have been tested), nor what is the ideal patient profile. “We are still in the early stages,” she admits. Where the most patients have been treated is in China and they have obtained positive results, but they tend to be more lax in the selection of patients, explains the doctor: “You go directly to surgery, without being chronic. At 17 years old you already have surgery. But we will always have the doubt as to whether they would have improved the same due to the natural evolution of the disease itself.” A group in Oxford has reported seven cases, but with more unfavorable results. In their research, they chose to focus on the nucleus accubens, an area of the brain that did not give good results to Villalba’s team either. “The one who has done very well is the Canadian group, who have published 18 patients. As a criticism, they have accepted serious patients, but they agreed to come in and gain about 12 kilos before the surgery and that is already a wonderful profile,” points out the neurosurgeon.
A little explored path
Since it is an experimental technique, scientists don’t know much about the long term either. “There is not enough experience in the world to know what is going to happen. We don’t know if they are going to continue well or if they will have to increase their intensity. Belén will have to have controls to check the system,” says Villalba.
In movement disorders, such as Parkinson’s, there is more experience with this technique: “We have been using it for 30 years and now it is used routinely in a profile of patients who do not respond to other drugs. It is an implanted and effective treatment: what you do is modulate the activity of the neurons and you improve the symptoms,” explains Álvaro Sánchez Ferro, coordinator of the Movement Disorders Study Group of the Spanish Society of Neurology. It has also been tested in epilepsy and dementia, but with irregular results, the neurologist adds. Each pathology is a world.
The scientific community is also investigating the potential of this technique in other mental disorders. The Hospital Clínic of Barcelona, for example, has tested deep brain stimulation in schizophrenia and bipolar disorder. “With neuromodulation techniques we try to respond to patients resistant to drugs and psychotherapy. Pathologies where the brain circuitry is well known and where you know that, by inhibiting a brain nucleus, you can regulate a pathway have a good profile. In more diffuse mental disorders, such as autism, it may not have as much weight,” explains Miquel Bioque, a psychiatrist at the Clínic who is leading this research.
The doctor, who admits not to be a specialist in the field of anorexia, does emphasize, however, that in his experience with bipolar disorder and schizophrenia, improvements are seen and the patient celebrates them, but he points to an eventual complexity in anorexia: “In your case, the improvement is gaining weight and a patient with anorexia does not want that. That’s why I see it as more complex for the improvements to be consolidated.” Villalba herself admits in her thesis that, when recruiting patients with severe anorexia, “it is difficult for these patients to accept a treatment that can make them gain weight.” Patients treated in the field of psychosurgery, in any case, are counted in a dropper and the evidence is limited, Bioque admits. “They are complex interventions, they are not done in any hospital, they are expensive and it is not so easy to find suitable patients. For now, it is important to clearly define the clinical profiles to see where they improve and which patients are most suitable.”