Progressive Spinal Muscular Atrophy Treatment in India
About Progressive Spinal Muscular Atrophy
Key Highlights
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Disease-Modifying Therapies: Modern treatments like gene therapy (e.g., onasemnogene abeparvovec) and nusinersen can significantly alter the disease course, especially when initiated early.Multidisciplinary Care: Involves a team of specialists including neurologists, pulmonologists, physiotherapists, and nutritionists for holistic management.Symptom Management: Focuses on maintaining mobility, managing respiratory function, and ensuring adequate nutrition to improve daily living.listrongImproved Prognosis:/strong With recent therapeutic advances, life expectancy and functional outcomes for individuals with SMA have improved substantially./lilistrongPersonalized Treatment Plans:/strong Care is tailored to the individual's SMA type, age, and specific symptoms for optimal results./li/ul
Who is this surgery for?
- Confirmed genetic diagnosis of 5q-autosomal recessive SMA via genetic testing (homozygous deletion/mutation in the SMN1 gene).
- Presentation of progressive muscle weakness, hypotonia (low muscle tone), and motor delay in infants and children.
- Progressive weakness in adolescents or adults, often starting in proximal muscles (hips, shoulders).
- History of motor milestones regression or failure to achieve them.
- Evidence of motor neuron dysfunction on electromyography (EMG) and nerve conduction studies.
- Presence of complications such as respiratory insufficiency, scoliosis, or swallowing difficulties related to SMA.
How to prepare
- Comprehensive Diagnosis: Confirmatory genetic testing and neurological evaluation to establish SMA type and baseline function.
- Pre-Treatment Assessments: Includes blood tests, liver function tests (for some therapies), cardiac evaluation, and baseline physical/occupational therapy assessment.
- Multidisciplinary Consultation: Meetings with the neurologist, pulmonologist, physiotherapist, and genetic counselor to discuss the treatment plan and goals.
- Informed Consent: Detailed discussion of the benefits, risks, long-term commitment, and costs of disease-modifying therapies.
- Logistical Planning: Arranging for hospital admission for intrathecal injections or gene therapy infusion, and planning for post-treatment monitoring.
- Support System Setup: Ensuring family/caregiver support and understanding of the long-term care requirements.
Risks & possible complications
- Treatment-Specific Risks: For gene therapy: potential for liver toxicity, thrombocytopenia, and elevated cardiac troponin-I. For intrathecal therapies: risk of post-lumbar puncture syndrome, headache, or back pain.
- Progression of Underlying Disease: Despite treatment, some muscle weakness and functional decline may still occur over time.
- Respiratory Complications: Risk of pneumonia, respiratory failure, and need for ventilatory support due to weakened respiratory muscles.
- Orthopedic Issues: Development or progression of scoliosis, joint contractures, and hip dislocations.
- Nutritional Challenges: Aspiration risk, chewing/swallowing difficulties (dysphagia), and failure to thrive.
- Psychosocial Impact: Emotional and psychological stress on the patient and family due to the chronic nature of the condition.
Recovery & hospital stay
- Immediate Post-Treatment: Close monitoring in a hospital setting for 24-48 hours following administration of gene therapy or loading doses of other medications for any acute reactions.
- Long-Term Monitoring: Regular follow-up with the neurologist (every 3-6 months initially) to assess motor function, manage symptoms, and monitor for treatment side effects.
- Rehabilitation: Ongoing, aggressive physical and occupational therapy is crucial to maintain range of motion, strength, and functional abilities.
- Supportive Care: Continuous management of respiratory health (sometimes with non-invasive ventilation), nutritional support (possibly via feeding tube), and orthopedic care (bracing, surgery for scoliosis).
- Lifestyle Adjustments: Incorporation of adaptive equipment and home modifications to promote independence and safety.
- Family Education: Training for caregivers in chest physiotherapy, assisted coughing techniques, and daily care routines.
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Typical hospital stay:
Varies widely (1-2 days for intrathecal injections; up to 2 weeks for gene therapy administration and monitoring)
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Expected recovery time:
Lifelong management; functional improvements from therapies may be seen over months to years
Frequently Asked Questions
If you are considering progressive spinal muscular atrophy in India, these questions and answers can help you make a confident, informed decision.
Popular choices for progressive spinal muscular atrophy in India include KMC Hospital Mangalore, Manipal Hospital Gurgaon, Manipal Hospital Jayanagar, Manipal Hospital Kharadi, Manipal Hospital Malleshwaram, known for experienced specialists and advanced surgical infrastructure.
Look at the doctor’s years of experience, hospital association, patient reviews, and how often they perform progressive spinal muscular atrophy. MediFyr helps you compare neurologists and book consultations online.
The overall cost depends on hospital category, surgeon’s experience, room type, implant or device used (if any), length of stay, tests, and post-operative care. Our team can help you get cost estimates from multiple hospitals before you decide.
Procedure cost in other countries
Here is an overview of how the estimated cost, hospital stay, and recovery time for progressive spinal muscular atrophy compare across other countries where we have data.
| Country | Estimated cost range | Typical stay | Recovery time | View details |
|---|---|---|---|---|
| India | INR 500 Thousand – 18 Million | Varies widely (1-2 days for intrathecal injections; up to 2 weeks for gene therapy administration and monitoring) | ~ Lifelong management; functional improvements from therapies may be seen over months to years | Know More |
| Turkey | TRY 1.75 Million – 63 Million | Varies widely (1-2 days for intrathecal injections; up to 2 weeks for gene therapy administration and monitoring) | ~ Lifelong management; functional improvements from therapies may be seen over months to years | Know More |
Top hospitals for Progressive Spinal Muscular Atrophy in India
These partner hospitals in India have dedicated neurology teams and experience managing patients undergoing progressive spinal muscular atrophy.
Gurgaon, India
60 Doctors
Sneha Mehta, a 28-year-old ambitious software...
Sneha Mehta, a 28-year-old ambitious software engineer, first noticed a persistent weakness in her hands while typing, which she initially dismissed as carpal tunnel. Over six months, the weakness progressed to her shoulders and back, making it difficult to lift her laptop bag or sit upright for long meetings. Her family history included a cousin with a neuromuscular condition. Her neurologist, after genetic testing confirmed a diagnosis of Type 3 Spinal Muscular Atrophy (SMA), recommended starting treatment with Risdiplam, a daily oral medication designed to increase production of the survival motor neuron protein. Sneha began treatment with cautious hope, managing mild initial side effects like a rash. After six months, the progression of her weakness has notably halted. She has regained some endurance and can now complete her workday without debilitating fatigue. Emotionally, she transitioned from fear and grief over a future she thought was lost to a determined, proactive mindset, finding a new community in SMA support groups and advocating for workplace accommodations.
Neurologists for Progressive Spinal Muscular Atrophy
Explore experienced neurologists who regularly perform progressive spinal muscular atrophy and provide pre- and post-operative care in India.
- 18 Years Experience
- Neurologist
Miot Hospital Chennai, Chennai
- 46 Years Experience
- Neurologist
Manipal Hospital Old Airport Road, Bangalore
- 25 Years Experience
- Neurologist
Manipal Hospital Old Airport Road, Bangalore
- 13 Years Experience
- Neurologist
SIMS Hospital Vadapalani, Chennai
- 13 Years Experience
- Neurologist
SIMS Hospital Vadapalani, Chennai
- 19 Years Experience
- Neurologist
Manipal Hospital Bhubaneswar, Bhubaneshwar
- 26 Years Experience
- Neurologist
Manipal Hospital Bhubaneswar, Bhubaneshwar
- 8 Years Experience
- Neurologist
Kamineni Hospital, Tadigadapa, vijayawada
- 9 Years Experience
- Neurologist
Manipal Hospital Bhubaneswar, Bhubaneshwar
- 5 Years Experience
- Neurologist
Kamineni Hospital, Tadigadapa, vijayawada
- 3 Years Experience
- Neurologist
Kamineni Hospital LB Nagar, Hyderabad
- 32 Years Experience
- Neurologist
Kamineni Hospital LB Nagar, Hyderabad
- 11 Years Experience
- Neurologist
Manipal Hospital Gurgaon, Gurgaon
- 7 Years Experience
- Neurologist
Kamineni Hospital LB Nagar, Hyderabad
- 8 Years Experience
- Neurologist
Manipal Hospital Ghaziabad, Ghaziabad
- 32 Years Experience
- Neurologist
Manipal Hospital Old Airport Road, Bangalore
- 19 Years Experience
- Neurologist
Manipal Hospital Old Airport Road, Bangalore
- 15 Years Experience
- Neurologist
Manipal Hospital Old Airport Road, Bangalore
- 14 Years Experience
- Neurologist
Manipal Hospital Old Airport Road, Bangalore
- 13 Years Experience
- Neurologist
Metro Hospital, Sector 11, Noida