“A diagnosis does not determine destiny; it is the courage to keep pushing forward that shapes our future.”
Halima’s world was turned upside down when her infant daughter, Nafisa, was diagnosed with hemimegalencephaly. It was a rare neurological condition in which one side of Nafisa’s brain was abnormally larger than the other, causing severe seizures and developmental delays.
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Determined to find the best possible treatment for Nafisa’s condition, Halima began researching and consulting with medical experts. After doing a lot of research, she took the leap and came to Delhi to get her daughter treated.
The improvement she saw in her daughter’s health has restored her faith in medicine. What makes hemimegalencephaly treatment in India attractive for patients?
What is Hemimegalencephaly?
Hemimegalencephaly is a rare neurological condition of the brain in which one side of the brain is abnormally larger than the other side. The structure of the brain on the affected area may be abnormal or show only subtle changes. It may occur alone or in association with other syndromes.
Children with this syndrome may have a large, asymmetric head with accompanied by seizures, partial paralysis and impaired cognitive development. The cause of hemimegalencephaly is not fully recognized but involves a disturbance of the cell in early development and likely involves genes involved in patterning and symmetry.
Anti-Seizures medications are typically not effective in controlling seizures because of which surgery is recommended to control seizures. If the affected side is removed, then the remaining side will take over the functions normally performed by the affected area. The effect of hamimegalencephaly vary depending on the severity of the brain malformation and the underlining cause of the condition.
Causes of Hemimegalencephaly
Basically, the scientists are still working to find out the exact reason of having Hemimegalencephaly. The cause of hemimegalencephaly is not recognized properly. But there are some signs that show the causes are:
- Single or Multiple gene mutation
- The cortex of the enlarged brain is malformed
- The white matter of the brain is abnormal
Symptoms of Hemimegalencephaly
Hemimegalencephaly is a rare neurological condition characterized by abnormal brain development, where one side of the brain is larger and structurally different from the other. Hemimegalencephaly symptoms and signs range in severity and might include:
- Seizures: The most prevalent and common sign of hemimegalencephaly is seizures. They often start in early childhood or in infancy, can be moderate or severe, and are frequently resistant to anti-seizure drugs.
- Developmental Delays: Children with hemimegalencephaly may experience delays in reaching developmental milestones, such as rolling over, sitting, crawling, or walking. Intellectual disabilities are also frequently observed.
- Hemiparesis or Hemiplegia: Weakness or paralysis affecting one side of the body (hemiparesis or hemiplegia) is common in hemimegalencephaly. It usually corresponds to the side of the brain that is affected.
- Cognitive and Behavioral Issues: Individuals with hemimegalencephaly may exhibit cognitive impairments, including learning difficulties, language delays, and problems with attention and memory. Behavioral issues such as hyperactivity, aggression, or social difficulties can also be present.
- Microcephaly: In some cases, the affected side of the brain grows abnormally, leading to an enlarged head size (microcephaly) on that side.
- Motor Abnormalities: Children with hemimegalencephaly may display motor abnormalities, such as abnormal movements, muscle stiffness (spasticity), or poor coordination.
- Vision and Hearing Problems: Hearing problems and vision impairments, such as visual field defects or blindness, can be brought on by the involvement of brain regions that process sensory data.
- Facial Asymmetry: Asymmetric facial features, such as a smaller or distorted appearance on one side of the face, may be present in some cases.
Diagnosis of Hemimegalencephaly
The diagnostic process for hemimegalencephaly involves a thorough medical history evaluation, physical examination, EEG to measure brain activity, brain imaging (MRI or CT scan) to visualize structural abnormalities, and genetic testing if a genetic cause is suspected. Additional assessments may be needed to evaluate functional impairment. The goal is to accurately identify hemimegalencephaly and guide appropriate management for the individual’s well-being.
Risk Factors of Hemimegalencephaly
Hemimegalencephaly is a rare neurological condition, and the exact risk factors that contribute to its development are not fully understood. However, certain factors have been identified that may increase the likelihood of hemimegalencephaly occurring. Here are some potential risk factors associated with hemimegalencephaly:
- Somatic mutations: Somatic mutations in the brain cells during early fetal development are considered a significant risk factor for hemimegalencephaly. The genes in charge of the brain’s growth and development may be altered by these abnormalities, leading to an abnormal expansion of one hemisphere.
- Genetic mosaicism: Hemimegalencephaly is often associated with genetic mosaicism, which means there is a mixture of normal and abnormal cells in the brain. This can arise due to somatic mutations or other genetic abnormalities and may increase the risk of developing hemimegalencephaly.
- Prenatal factors: Some prenatal factors have been suggested to increase the risk of hemimegalencephaly. These may include maternal infections during pregnancy, exposure to certain medications or toxins, or other environmental factors. However, more research is needed to establish a clear link between these factors and hemimegalencephaly.
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Hemimegalencephaly treatment in India
Hemimegalencephaly is commonly treated in India using a multidisciplinary approach involving a range of medical specialists, such as neurologists, neurosurgeons, developmental pediatricians, and rehabilitation specialists. The treatment options aim to manage seizures, improve developmental outcomes, and enhance the individual’s quality of life.
These are some of the common treatment for Hemimegalencephaly in India:
- Medication: Hemimegalencephaly-related seizures can be managed and controlled with the aid of antiepileptic drugs. The choice of medication and dosage depends on the individual’s specific seizure patterns and response to treatment. Regular follow-ups and adjustments in medication may be necessary to achieve optimal seizure control.
- Surgery: In cases where seizures are severe and difficult to control with medications, surgical intervention may be considered. To lessen seizure activity and enhance the patient’s quality of life, a hemispherectomy, a surgical treatment that involves the removal or disconnection of the afflicted hemisphere, may be carried out. The decision for surgery is made based on careful evaluation and consideration of the individual’s overall health, seizure frequency, and developmental needs.
- Rehabilitation therapy: Rehabilitation therapies play a crucial role in managing functional impairments and promoting developmental progress in individuals with hemimegalencephaly. To treat motor issues, improve coordination and fine motor skills, and boost communication and language skills, physical therapy, occupational therapy, and speech therapy may be advised.
- Assistive devices and supportive interventions: Depending on the specific needs of the individual, assistive devices such as braces, orthotics or communication aids may be prescribed to improve mobility, independence and communication.
- Parental education and support: A crucial part of treatment is educating and supporting parents and carers. They are guided on how to manage seizures, monitor medication, facilitate developmental progress, and access support networks or resources available for individuals with hemimegalencephaly.
Hemimegalencephaly treatment cost in India
The cost for Hemimegalencephaly treatment in India ranges between USD 16000 – USD 20000.
Top 10 Hospitals for Hemimegalencephaly treatment in India
The top hospitals in India for Hemimegalencephaly treatment have been compiled by GoMedii. These hospitals offer you individualized care with one of India’s top neurology teams and cutting-edge medical facilities.
- Aster CMI Hospital
- Max Hospital Shalimar bagh
- Rainbow Hospital Delhi
- Fortis Hospital Noida
- Apollo Hospitals, Bannerghatta
- Fortis Hospital and Kidney Institute (Rash Behari Ave)
- Apollo Hospital
- Lilavati Hospital And Research Center, Mumbai
- Apollo Hospitals City Center
- Indraprastha Apollo Hospital, New Delhi
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