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For Caregivers

Advice for Caregivers 

If you and your family decide to pursue DBS for your child, it will have an impact on your role as a caregiver. In addition to tests, surgeries, and hospital stays, regular clinical visits are required for device programming. While your child's quality of life could improve, there may also be new and unexpected challenges for you as a caregiver.

Because outcomes are different for every patient, we can't tell you what life following DBS surgery will be like. However, we can share insight and recommendations from other caregivers of patients who have undergone DBS. Your medical team will be in the best position to provide you and your family with the most accurate information tailored to your child’s condition and circumstances.


What Other Caregivers Say 

Ensuring you have a correct diagnosis will help you resolve confusion and avoid future complications. Consider genetic testing for dystonia. 
Work with a clinician you trust and whom you consider a partner. The clinician should have good communication and interpersonal skills with both caregivers and the patient. 
Your clinician should be a specialist or expert in movement disorders, including primary and secondary dystonia. 
Avoid focusing on miracle stories. There are many challenges along the way with DBS, even when it works. Be prepared for the possibility that DBS may not work for your child. 
It's important to be prepared for the possibility that your child may need a revision surgery that wasn't planned (for example, if the brain shifts during the initial surgery). 
Access to a child psychologist or therapist can provide your child with informational and emotional support. A therapist can act as a neutral third party, focused on the interests and concerns of your child.  
DBS Access, Insurance, and Cost 

Accessibility to DBS is a significant consideration for many caregivers and clinicians. Talk to your doctor, financial advisor, and hospital financial resources to understand the cost of treatment and insurance coverage. Considering these isues as well as the need to take time away from work and potential travel demands is important when considering DBS for a child with dystonia.  


Common Concerns and Questions 

If you and your family are considering DBS for your child, you may share many of the concerns of other parents and caregivers who have considered DBS. Here are some common concerns and questions, along with responses from clinicians and experts in DBS. 


As a caregiver, you may have concerns about stroke, brain bleeds, and long-term brain damage, along with general concerns about the fact that DBS involves neurosurgery. Many caregivers are worried about their child being awake during surgery, or about their child having a surgery that requires making holes in the skull.

Clinicians note that DBS surgery isn't this dramatic. Instead, it includes drilling small holes into the patient's skull to enable device placement.  

Psychological Impacts  

Some caregivers are worried about the long-term risks associated with DBS, including long-term psychological impacts due to scarring or feeling different from other kids.

Patients, too, may be concerned about needing to have some of their hair shaved for surgery and the emotional distress this may cause. Some patients also feel uncomfortable about being in the hospital for long periods of time, away from their families, pets, and friends. Other patients express anxiety at the thought of having to travel far away from home to access DBS and programming appointments.

Clinicians also express concern that unrealistic expectations can cause disappointment and long-term psychological impacts. Being informed, communicating regularly, and setting realistic expectations can help both caregivers and patients. 

Daily Life with the DBS Device 

Some patients worry that they'll feel the DBS device in their brain during daily life and will find it to be an uncomfortable or limiting sensation.  

Clinicians note that patients typically do not feel the device post-implantation, which has been corroborated by past patients.   

Activities and Travel 

Patients and caregivers are often confused about limitations that DBS may pose, including limitations to activities and travel.  

Clinicians explain that, while travel may be more difficult, the DBS device doesn't prohibit patients from traveling.  

Overall Outcomes 

Patients and caregivers often express concerns about outcomes. Caregivers and patients alike worry about patients traveling long distances, undergoing neurosurgery, and enduring long programming, just to find that DBS doesn't help with dystonia symptoms.  

Clinicians advise that DBS does not cure treatment-resistant dystonia or instantly alleviate symptoms, but it has the potential to improve a child’s quality of life. Because outcomes differ for every patient, only you can decide if your child and family are prepared for the challenges involved in DBS.

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