Deep Brain Stimulation for OCD: How it works, Success Rate, Cost

Deep Brain Stimulation for OCD is an FDA-approved neuromodulation treatment. The DBS device implanted in the brain alters the patient’s brain waves and significantly reduces OCD symptoms.

DBS is reserved for treatment-resistant patients who don’t respond to less invasive, traditional treatments. The success rate of the treatment is high and some stimulation effects can be felt immediately. Patients will get the full benefits of the treatment after a year.

Treatment-refractory patients who are 18 or older can qualify for DBS treatment. The surgery & stimulation has minimal side effects that can be easily treated. DBS for OCD can be a costly treatment due to a lack of cooperation from insurance companies.

Here are some key points from the article:

The success rate of DBS for OCD is 56% to 60%.
Patients can feel their depression and anxiety symptoms improve immediately.
DBS treatment can significantly reduce OCD symptoms, including intrusive thoughts and repetitive behaviors.
DBS targets specific brain areas associated with OCD symptoms, such as the ventral capsule, ventral striatum, and nucleus accumbens.
Insurance coverage for DBS for OCD varies, with Medicare and Medicaid covering the costs in the US, but private insurers often consider it experimental.

“I just felt lighter, there was just this feeling in me, something inside me felt lighter.“

Patient 5, from research by Nicola Acevedo et al.

“I feel as if I’m brighter […] believe it or not, I stand a lot taller than I used to stand…I just felt like I had the whole world on my shoulders.“

Patient 1, from research by Nicola Acevedo et al.

What is Deep Brain Stimulation (DBS)?

Deep Brain Stimulation (DBS) is a treatment where a patient’s brain activity is altered by placing electrodes on the brain that send electrical currents generated by a device (neurostimulator) similar to a pacemaker. The leads and the neurostimulator device are placed surgically. Once the patient heals from surgery, the device can be turned on and stimulation can begin. When optimal stimulation settings are found, patients will experience a profound reduction in their symptoms.

DBS is an FDA-approved treatment for Parkinson’s disease, essential tremor, dystonia, and epilepsy besides OCD.

Currently, DBS is an option for adult patients with Treatment-Resistant OCD.

What is Obsessive-Compulsive Disorder (OCD)?

Obsessive-Compulsive Disorder (OCD) is characterized by intrusive thoughts (obsessions) and repetitive behaviors (compulsions). The intrusive thoughts are irrational, and distressing to the patient, as they don’t reflect the patient’s feelings and thoughts. Experiencing such thoughts makes OCD patients deeply uncomfortable and anxious. OCD patients will perform rituals to take control of their anxiety and to get rid of irrational thoughts.

However, no matter how many rituals a patient performs, anxiety and irrational thoughts reoccur. This puts the OCD patient in a cycle where they are constantly anxious with obsessions and preoccupied with their compulsive behaviors.

How does OCD affect the daily lives of patients?

OCD can be highly debilitating, hindering a person’s participation in education, family life, and work. The intrusive thoughts can prevent individuals from engaging in social activities, eroding their confidence. The extensive rituals compelled by the disorder can take a significant portion of their day, rendering them unable to pursue other activities.

This constant struggle with intrusive thoughts and rituals can extend to impacting the physical health of the patient, leading to fatigue, self-injury behaviors, or skin conditions resulting from compulsive cleaning.

What are the treatment options for OCD?

Currently, the traditional first-line treatment methods for OCD are as follows:

Medications such as citalopram, paroxetine, fluvoxamine, sertraline, and fluoxetine, or clomipramine.
Cognitive Behavioral Therapy (CBT) / Exposure and Response Prevention (ERP)
Inpatient/Outpatient programs depending on the severity of the condition

Most patients will respond greatly to the first-line treatment of OCD with high doses of SSRI medications in conjunction with CBT/ERP. However, about 30% of OCD patients unfortunately do not respond to first-line traditional treatment options according to research from Guangdong Mental Health Center in China.

Traditional methods can be limiting for patients, preventing them from receiving the full care they may need to improve. These limitations might include things like having severe side effects from the medications, not having access to a therapist or a treatment center, and not having the time or the ability to commit to therapy fully.

If these treatment options do not help reduce symptoms, there are additional more invasive and/or experimental treatments that can be recommended by doctors such as;

Deep Brain Stimulation (DBS)
Ablation Surgery
Transcranial Magnetic Stimulation (TMS)
Transcranial Direct Current Stimulation (tDCS)

At the end of the day, if the patient can’t benefit from traditional treatments, opting for non-traditional, experimental, or more invasive treatments can be the lifeline.

Many non-traditional treatments, including DBS, are highly effective when it comes to treatment-resistant OCD. And with how debilitating this disease can get, and the risk of suicidality, patients must seek an option that will work for them before they risk losing hope.

How does DBS compare to other treatments for OCD?

In comparison to Deep Brain Stimulation, TMS and tDCS are non-invasive procedures. They both have promising results when it comes to OCD, although the effects of TMS are similar to medication. Researchers from Sapienza University recommended patients try these non-invasive options before opting for DBS or ablation surgery, though they are not mandatory before invasive treatments.

The most comparable option to Deep Brain Stimulation is ablation surgery, as both are considered the last options for treatment-resistant OCD and have similar success rates. Ablation surgery is more invasive, and it’s non-reversible, which is its major downside. It doesn’t require upkeep and maintenance on devices, batteries, or stimulation adjustments as DBS does, making the treatment more affordable overall.

Can you have Deep Brain Stimulation for OCD with CBT?

Yes, research published by Damiaan Denys et al. of the University of Amsterdam recommends that patients continue receiving CBT after going through DBS as the success of therapy can depend on the stimulation.

The first time the patients went through CBT, it might not have been effective. However with the mental clarity patients can have after DBS, they might find it easier to employ the skills they learned in CBT to manage their compulsive behavior.

How does Deep Brain Stimulation for OCD work?

Before the operation, patients go through an extensive evaluation. A detailed psychiatric history is taken and presented to a board of DBS professionals. Only if the patient gets approved, they can go through with the pre-surgical test and the surgery. The tests include the following:

Physical & neurological exams.
Blood, urine, and pregnancy screening.
MRI imaging.

After these tests, if the patient is in good condition to go through with surgery, informed consent is taken. The surgery will be performed the same way it’s performed for movement disorders.

Two leads will be placed on either side of the brain. The latest FDA-approved device for OCD is the Reclaim system by Medtronic. After surgery, patients can go back home in 1-2 days.

For OCD, numerous brain areas can be targeted for DBS lead placement:

Ventral Capsule / Ventral Striatum
Anterior Limb of The Internal Capsule
Nucleus Accumbus

These areas are very close to each other, and can even be considered the same area of the brain. They are a part of a larger structure called the basal ganglia, which is responsible for things such as movement, learning, habits, emotions, and more.

In patients with OCD, abnormalities in these brain areas can be observed; patients can have poor emotional regulation (anxiety), and may need to perform unusual habits (compulsions). DBS will restore healthy activity to these areas and the symptoms of the illness will subside over time.

What is the success rate of Deep Brain Stimulation for OCD?

Around 56% to 60% of patients are considered responsive to DBS treatment for OCD according to the Yale-Brown Obsessive Compulsive Scale, with an average of 42.5% to 47.4% decrease in scores according to two research papers and one meta-analysis from OCD Clinical and Research Unit in Hospital de Bellvitge. Deep Brain stimulation will also reduce OCD-related depression and anxiety by 50% according to research from the University of Amsterdam.

According to a recent long-term analysis of Deep Brain Stimulation treatment for OCD by Lorea Mar-Barrutia et al;

56% of patients were responsive, and 16% of responsive patients were considered cured.
28% of patients were partially responsive.
16% of patients were non-responders.

When can you see the results of Deep Brain Stimulation for OCD?

Assuming the patient is a responder to the treatment, according the research from the University of Amsterdam, once stimulation is started symptoms will decrease in a specific order as shown in the graphic; depression will improve in seconds, anxiety in minutes, obsessions in days, and compulsions in weeks to months.

However, this graphic does not reflect the full picture. Even though some results can be seen immediately, the full benefits of DBS will be reflected after a full year of stimulation.This is why, even if a patient seems partially responsive within the first year of stimulation, treatment should be continued as there’s still a chance for the patient to improve further.

Which types of OCD can be treated with Deep Brain Stimulation?

DBS can be effective for different types of OCD. However, according to a meta-analysis from 2015, DBS is most effective for sexual/religious obsessions & compulsions.

As of today, hoarding is no longer a type of OCD under the DSM-V, and current evidence suggests that DBS for hoarding tendencies is not effective.

DBS might not be effective if the OCD symptoms are related to perfectionism, symmetry, and ordering behaviors.

It’s also not recommended that patients with body image-related issues, intrusive thoughts about their body, body dysmorphic disorder, or hair-pulling compulsions (trichotillomania) (book) refrain from DBS as the procedure won’t be effective enough, and the presence of a foreign object in their body can be highly disturbing.

Which OCD patients qualify for Deep Brain Stimulation?

Patients can qualify for Deep Brain Stimulation if they have the following criteria:

The patient is 18 or older.
The patient must have a primary diagnosis of OCD for 5 years.
The patient must have a minimum Y-BOCS score of 28-30 or higher.
The patient must have a GAF score of 45 or lower.
The patient must have shown no improvements after 20 hours of ERP therapy.
The patient must have shown no improvements after 3 rounds of different SSRIs at maximum dosage, and additional treatment with antipsychotics or benzodiazepines.
The patient must be in a physically and mentally healthy state to go through with surgery.
The patient should be able to quit their medication for at least 6 weeks so the effects of the procedure can be properly seen.

Patients cannot be a candidate for DBS if they have the following conditions:

If the patient is younger than 18, or pregnant.
If the patient is not cognitively stable enough to give explicit informed consent.
If the patient had or has other severe illnesses such as psychotic disorder, bipolar disorder, personality disorders, substance abuse disorder, or body dysmorphic disorder.
If the patient is acutely suicidal.
If the patient has any kind of bleeding disorder that can prevent them from getting surgery.

What is the age limit of Deep Brain Stimulation for OCD?

Currently, the use of DBS devices on OCD patients by HDE is limited to the adult population. Of course, using DBS on young children and teenagers is highly controversial, and is subject to many justified ethical concerns. However, the onset of OCD is common in childhood and adolescence, and there is an argument to be made about the use of DBS devices on children and teenagers with OCD.

A recent study from Baylor College of Medicine surveying teenagers with OCD and their parents found that patients and their parents were more open to considering DBS for treatment-resistant OCD when they were familiar with how it worked, when their child had thoughts of harming themselves, and when they were assured it could improve their child’s daily life. However, worries about safety, changes in personality, and potential long-term effects on the body made parents more hesitant to consider DBS.

On average, a patient is left to live with the disease for 24 years before they can access DBS surgery. As of now, there is no way we can know if DBS can work better for teenagers and children, as it does with later-onset adults.

What are the side effects and complications of Deep Brain Stimulation for OCD?

For device-related DBS complications, we can list wound infection, headache, and a tightness sensation where extension wires are placed. Wound infections are more likely to occur in patients with diabetes. Headaches after surgery are common and will go away as one gets used to the device. Tight extension wires can lead to breakage, but it’s an easily manageable complication.

Other temporary side effects of DBS can include memory issues, weight gain, insomnia, fatigue, stomach and bowel movement problems, and bed wetting.

The most common psychiatric side effect of DBS is hypomania (44% prevalence), followed by apathy and anxiety. If a patient experiences hypomania or a psychotic episode after surgery, it can be easily treated by either adjusting stimulation parameters or with a short course of psychiatric medication.

If the patient has current or past thoughts of suicidal ideation or action, the treatment can aggravate these tendencies. For this reason, patients under these circumstances should have a reliable support system and be monitored closely.

How much does Deep Brain Stimulation cost for OCD?

The cost of DBS for OCD, when paid out of pocket can be very expensive and pricing can range from $30,0000 to more than $100,000. This range includes all expenses; the device, surgery, programming, and a year of post-op visits.

From a survey performed at Florida University, a patient paid $104,000 out of pocket to get DBS for her OCD.
In a cost-effectiveness analysis from the Netherlands, the total cost of DBS for OCD for 2 years of treatment was €88.946. Adjusted for today’s currency exchange rate and inflation, it sets the price at $124,185.
In a cost-effectiveness analysis focusing on South Korea and the UK, it was determined that over 10 years DBS for OCD can cost the Korean healthcare system $42,322 (adj. $53,194) and the NHS $37,865 (adj. $47,592). DBS treatment was found to be cost-effective by WHO and NICE standards.

Does insurance cover DBS for OCD?

Medicare and Medicaid cover the costs of DBS for OCD in the US. We have checked the DBS policies of multiple private health insurance in the US and found that none of them cover DBS for OCD. Even though there’s enough data behind the treatment to grant HDE, which means that the FDA has decided the benefits of this procedure outweigh its risks; almost all insurance companies refuse coverage because they consider the treatment “experimental”.

In the UK, the National Institute for Health and Care Excellence (NICE) recommended that DBS for OCD is highly experimental, and should be performed as research only. As of now, NHS coverage for DBS is only available for movement disorders.

So why is Deep Brain Stimulation for OCD not widely available even though it’s approved by the FDA? We have found 2 studies from 2021 that explain why DBS for OCD is not as widely available as it should be.

From a review performed at the University of Florida:

It was identified that before 2009, 86% of patients eligible for DBS went through the surgery through the university’s research fund. After 2009, this number decreased to 50%. Of those 50 percent, 6 had Medicare coverage, 1 was denied coverage by Medicaid, 1 paid out of pocket, and one was denied coverage by their private insurance even though they had pre-approval.
Out of 10 patients eligible for surgery, 7 were not able to get the procedure because their private insurance did not provide coverage.
The authors state that after the HDE exemption, they thought the treatment would be more widely available. But the opposite happened because private insurance providers refused coverage.
Even in the case of state-provided insurance, to qualify for Medicare, patients have to be 65 or should have SSDI, which has extreme qualification mandates.

From an opinion article published in Frontiers Psychology Journal by Davis et al:

The article states that insurance companies are wrong to label DBS for OCD as “experimental and investigational” as investigational devices are covered by Investigational Device Exemptions and not HDE.
The authors call out insurance companies for Covering DBS for dystonia through the HDE, but not OCD which has the same exemption, pointing out a clear negative bias toward mental illness.
Among the reasons why insurance companies denied coverage, there was none about the procedure not being medically necessary, but multiple instances of the treatment being considered “experimental”.

What can you do if Deep Brain Stimulation for OCD is not available or too expensive where you live?

You can consider options such as joining a clinical trial or traveling to another country to get the surgery.

In most cases, clinical trials will cover the cost of treatment, and some expenses can even be covered by insurance. However, clinical trials are rare, and it’s difficult to find a clinical trial in your area that you qualify for.

Visiting another country to get Deep Brain Stimulation if the treatment is not available or extremely expensive where you live. Medical travel can allow you to get the treatment you need at an affordable cost.

Can you get Deep Brain Stimulation for OCD in Turkey?

Yes, you can get Deep Brain Stimulation in Turkey if you qualify for the treatment, but can’t pursue it due to costs or unavailability.

Here in Turkey, we can help foreign patients the treatment they need, at an affordable price. Turkey has renowned neurosurgeons specializing in neuromodulation. If you are interested in this treatment, you can contact us for a free consultation with a Deep Brain Stimulation specialist.

Which clinical trials are currently conducted for DBS for OCD?

As of February 2024, there are 61 clinical trials available worldwide studying DBS for OCD. The current trials focus on aspects such as trying out different brain area placements, adaptive Deeb Brain Stimulation methods, and long-term follow-ups with patients.

Which improvements can be made to further develop DBS as a treatment for OCD?

As it’s no surprise, the first improvement to be made is on the part of insurance companies. DBS for OCD should be held to the same standard as dystonia and should be covered by insurance. Insurance coverage will make the treatment much more affordable, and more widespread and will help a lot of people.

Advancements can be made in the precision of the electrode placement with various imaging techniques. And improvements can be made in electrode placement on the brain to individualize treatment for patients.

Advancements in battery technology can help patients go longer between charging sessions or replacements, as the treatment of OCD requires more power.

Adaptive/closed-loop technologies can also improve the treatment.