Surgery & Procedures Requiring Anesthesia
Note: The content on this page and throughout this website should not be used as a substitute for medical care. For medical care or advice related to breathing muscle weakness, please seek the care of a clinician who specializes in the breathing issues of those with Neuromuscular Disease (NMD).
Anyone with a Neuromuscular Disease (NMD) of any kind should be well-informed about potential complications that could arise resulting from procedures that require anesthesia* and intubation**. Breathe with MD, Inc. recognizes these are complex topics and that factors such as type and/or subtype of NMD, age, and general health condition of the individual all influence risk level and outcomes. For those reasons, this page will only serve as an introductory resource hub with reliable information to review and discuss with your family, caregivers, and medical professionals.
Written materials that we share on this page include one or more of the following relevant topics.
We have listed them in two categories, "General Written Materials," content covering multiple specific forms of NMD or refer to NMD as a whole and "Disease-Specific Written Materials," content that covers specific types or forms of NMD.
If you have additional applicable content you would like to contribute to this page, please email us about it.
*Anesthesia-The use of medicines, (anesthetics) to prevent pain during surgery and other procedures. They may be administered by injection, inhalation, topical lotion, spray, eye drops, or skin patch and cause the individual to have a loss of feeling or awareness. **Intubation-Intubation is a process where a medical professional/clinician inserts a tube through an individual's mouth or nose, then down into their trachea (airway/windpipe). The tube keeps the trachea/airway open so that the anesthesiologist has control over the patient's airway and to provide breathing support with a ventilator.
General Written Materials:
The following medical articles cover multiple, specific forms of Neuromuscular Disease (NMD) or refer to NMD as a whole.
Note: The content on this page and throughout this website should not be used as a substitute for medical care. For medical care or advice related to breathing muscle weakness, please seek the care of a clinician who specializes in the breathing issues of those with Neuromuscular Disease (NMD).
Anyone with a Neuromuscular Disease (NMD) of any kind should be well-informed about potential complications that could arise resulting from procedures that require anesthesia* and intubation**. Breathe with MD, Inc. recognizes these are complex topics and that factors such as type and/or subtype of NMD, age, and general health condition of the individual all influence risk level and outcomes. For those reasons, this page will only serve as an introductory resource hub with reliable information to review and discuss with your family, caregivers, and medical professionals.
Written materials that we share on this page include one or more of the following relevant topics.
- types of anesthetics
- pre-anesthetic evaluation
- anesthetic management
- postoperative management
- perioperative complications
We have listed them in two categories, "General Written Materials," content covering multiple specific forms of NMD or refer to NMD as a whole and "Disease-Specific Written Materials," content that covers specific types or forms of NMD.
If you have additional applicable content you would like to contribute to this page, please email us about it.
*Anesthesia-The use of medicines, (anesthetics) to prevent pain during surgery and other procedures. They may be administered by injection, inhalation, topical lotion, spray, eye drops, or skin patch and cause the individual to have a loss of feeling or awareness. **Intubation-Intubation is a process where a medical professional/clinician inserts a tube through an individual's mouth or nose, then down into their trachea (airway/windpipe). The tube keeps the trachea/airway open so that the anesthesiologist has control over the patient's airway and to provide breathing support with a ventilator.
General Written Materials:
The following medical articles cover multiple, specific forms of Neuromuscular Disease (NMD) or refer to NMD as a whole.
A Review on the Anesthetic Management of Patients with Neuromuscular Diseases
Radkowski, P., Suren, L., Podhorodecka, K., Harikumar, S., & Jamrozik, N. (2023). A Review on the Anesthetic Management of Patients with Neuromuscular Diseases. Anesthesiology and pain medicine, 13(1), e132088. https://doi.org/10.5812/aapm-132088
Radkowski, P., Suren, L., Podhorodecka, K., Harikumar, S., & Jamrozik, N. (2023). A Review on the Anesthetic Management of Patients with Neuromuscular Diseases. Anesthesiology and pain medicine, 13(1), e132088. https://doi.org/10.5812/aapm-132088
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Article Conclusion:
"When a patient with MD undergoes general anesthesia, various serious problems can occur. Problems of anesthesia in patients with NMDs arise from the nature of the condition itself and the interaction of anesthetics and muscle relaxants with anticholinesterase drugs used in therapy. Each patient’s individual risk should be assessed before anesthesia. Therefore, it is important (and even necessary before major surgery) to perform a thorough preoperative examination to not only determine perioperative risk but also to ensure optimal perioperative followup. Careful preoperative assessment and management of patients suffering from NMDs decrease postoperative complications. The choice of anesthetic technique should be based on a cautious assessment of the balance of benefits and risks. Moreover, the patient should bemonitored especially closely during surgery. It is also necessary to be aware of the consequences of the actions and how to counteract them."
"When a patient with MD undergoes general anesthesia, various serious problems can occur. Problems of anesthesia in patients with NMDs arise from the nature of the condition itself and the interaction of anesthetics and muscle relaxants with anticholinesterase drugs used in therapy. Each patient’s individual risk should be assessed before anesthesia. Therefore, it is important (and even necessary before major surgery) to perform a thorough preoperative examination to not only determine perioperative risk but also to ensure optimal perioperative followup. Careful preoperative assessment and management of patients suffering from NMDs decrease postoperative complications. The choice of anesthetic technique should be based on a cautious assessment of the balance of benefits and risks. Moreover, the patient should bemonitored especially closely during surgery. It is also necessary to be aware of the consequences of the actions and how to counteract them."
Anesthetic Implications of Muscular Dystrophy
Echeverry-Marín, P. C., & Bustamante-Vega, N. M. (2018). Anesthetic implications of muscular dystrophies. Colombian Journal of Anesthesiology, 46(3), 228–239. https://doi.org/10.1097/cj9.0000000000000059
Echeverry-Marín, P. C., & Bustamante-Vega, N. M. (2018). Anesthetic implications of muscular dystrophies. Colombian Journal of Anesthesiology, 46(3), 228–239. https://doi.org/10.1097/cj9.0000000000000059
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Article Conclusion:
“Muscular dystrophies are a group of congenital, heterogeneous diseases, with a different genetic origin and with widely variable clinical manifestations. All of them have significant anesthetic implications that represent a very high perioperative risk for patients, and require accurate knowledge to anticipate and provide specific management in each case. The main complications of muscular dystrophies are ventilator failure, malignant cardiac arrhythmias, hyperkalemia, rhabdomyolisis, cardiovascular instability, and sudden death. Although these diseases are apparently unrelated to malignant hyperthermia, they do share the need to avoid the use of depolarizing muscle relaxants and prefer the use of intravenous anesthetic techniques or regional anesthesia to reduce the risk of these complications, that could be associated with the use inhaled anesthetics. A careful pre-surgical evaluation is recommended to identify the general condition of each patient, the surgical risk, and to adopt a multidisciplinary approach that ensures the best perioperative care and reduces the complications associated with the disease and the management of anesthesia. It is mandatory to assess the risk/ benefit of any surgical and anesthetic procedure in patients with muscular dystrophy, before an intervention.”
“Muscular dystrophies are a group of congenital, heterogeneous diseases, with a different genetic origin and with widely variable clinical manifestations. All of them have significant anesthetic implications that represent a very high perioperative risk for patients, and require accurate knowledge to anticipate and provide specific management in each case. The main complications of muscular dystrophies are ventilator failure, malignant cardiac arrhythmias, hyperkalemia, rhabdomyolisis, cardiovascular instability, and sudden death. Although these diseases are apparently unrelated to malignant hyperthermia, they do share the need to avoid the use of depolarizing muscle relaxants and prefer the use of intravenous anesthetic techniques or regional anesthesia to reduce the risk of these complications, that could be associated with the use inhaled anesthetics. A careful pre-surgical evaluation is recommended to identify the general condition of each patient, the surgical risk, and to adopt a multidisciplinary approach that ensures the best perioperative care and reduces the complications associated with the disease and the management of anesthesia. It is mandatory to assess the risk/ benefit of any surgical and anesthetic procedure in patients with muscular dystrophy, before an intervention.”
Anaesthesia and Rare Neuromuscular Diseases
Radeka, J. Z., Stojanovic, M. D., Vasilijic, M. N., Randjelovic, M. M., & Jankovic, R. J. (2023). Anesthesia and rare neuromuscular diseases. Frontiers in Anesthesiology, 2. https://doi.org/10.3389/fanes.2023.1159436
Radeka, J. Z., Stojanovic, M. D., Vasilijic, M. N., Randjelovic, M. M., & Jankovic, R. J. (2023). Anesthesia and rare neuromuscular diseases. Frontiers in Anesthesiology, 2. https://doi.org/10.3389/fanes.2023.1159436
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Article Conclusion:
"At the end of the research on rare muscle diseases, taking into account the study of data from the latest literature, we can conclude that there is a great correlation and the importance of the knowledge that anesthesiologists possess as health professionals responsible both for keeping the patient alive during the state of anesthesia, and for his safe awakening and recovery without consequence.In the diseases where motor neuron or peripheral nerves are affected the use of halogen anesthetics is safe and use of succinylcholine is forbidden, while in patients with a disorder of the neuromuscular junction the use of volatile anesthetics is considered safe.
In myopathic patients, the use of inhaled anesthetics and succinylcholine carries a risk for malignant hyperthermia or acute rhabdomyolysis. So the recommendation is to avoid their use in these patients. Intravenous anesthetics and opioids can lead to respiratory and cardiac depression, so it is necessary to carefully titrate the doses of these drugs in patients with neuromuscular disorders. According to nondepolarizing neuromuscular relaxants, the general recommendation is that whenever possible, they should be avoided. If their use is necessary, then it is preferable to reduce the doses and use the neuromuscular monitoring. Anticholinesterase drugs are not recommended because they can lead to hyperkalemia. Whenever muscle relaxation is needed during the surgical intervention the safest recommendation is to use of sugammadex as an antidote to rocuronium or vecuronium.
As previously supported by many evidences and clinical cases, patients with rare muscle diseases can be very demanding when it comes to anesthesiological approach precisely because of their often difficult general condition of the body, altered response to anesthetics and a more difficult and longer recovery period. What we all have to work on is adequate and complete taking of a detailed medical history in such patients, as this can greatly influence the decisions we will make during the operation.
There remains the further task of examining this area because it has been covered very little in the literature, and all with the aim of providing the best possible care to this small group of patients."
"At the end of the research on rare muscle diseases, taking into account the study of data from the latest literature, we can conclude that there is a great correlation and the importance of the knowledge that anesthesiologists possess as health professionals responsible both for keeping the patient alive during the state of anesthesia, and for his safe awakening and recovery without consequence.In the diseases where motor neuron or peripheral nerves are affected the use of halogen anesthetics is safe and use of succinylcholine is forbidden, while in patients with a disorder of the neuromuscular junction the use of volatile anesthetics is considered safe.
In myopathic patients, the use of inhaled anesthetics and succinylcholine carries a risk for malignant hyperthermia or acute rhabdomyolysis. So the recommendation is to avoid their use in these patients. Intravenous anesthetics and opioids can lead to respiratory and cardiac depression, so it is necessary to carefully titrate the doses of these drugs in patients with neuromuscular disorders. According to nondepolarizing neuromuscular relaxants, the general recommendation is that whenever possible, they should be avoided. If their use is necessary, then it is preferable to reduce the doses and use the neuromuscular monitoring. Anticholinesterase drugs are not recommended because they can lead to hyperkalemia. Whenever muscle relaxation is needed during the surgical intervention the safest recommendation is to use of sugammadex as an antidote to rocuronium or vecuronium.
As previously supported by many evidences and clinical cases, patients with rare muscle diseases can be very demanding when it comes to anesthesiological approach precisely because of their often difficult general condition of the body, altered response to anesthetics and a more difficult and longer recovery period. What we all have to work on is adequate and complete taking of a detailed medical history in such patients, as this can greatly influence the decisions we will make during the operation.
There remains the further task of examining this area because it has been covered very little in the literature, and all with the aim of providing the best possible care to this small group of patients."
Anaesthesia and Rare Neuromuscular Diseases
Pota, V., Nigro, G., Limongelli, G., Esposito, C., & Pace, M. C. (2022). Anaesthesia and Rare Neuromuscular Diseases. The Open Anesthesia Journal, 16(1). https://doi.org/10.2174/25896458-v16-e2202280
Pota, V., Nigro, G., Limongelli, G., Esposito, C., & Pace, M. C. (2022). Anaesthesia and Rare Neuromuscular Diseases. The Open Anesthesia Journal, 16(1). https://doi.org/10.2174/25896458-v16-e2202280
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Article Conclusion:
“Finally, it is very difficult to interpret with the usual parameters the kidney function, as all neuromuscular patients with depletion of the muscles present themselves with a very low level of circulating creatinine; thus, the evaluation of the volemic status with the help of echocardiography or invasive monitoring systems and the careful examination of the amount of urine produced and the dosage of cystatin fundamental. Based on all these considerations, the presence of multidisciplinary reference centers for the treatment of neuromuscular pathologies is thus important, and the anaesthesiologist and the intensivist constitute an integral part of the team of care for patients suffering from this rare and extremely complex pathology.”
“Finally, it is very difficult to interpret with the usual parameters the kidney function, as all neuromuscular patients with depletion of the muscles present themselves with a very low level of circulating creatinine; thus, the evaluation of the volemic status with the help of echocardiography or invasive monitoring systems and the careful examination of the amount of urine produced and the dosage of cystatin fundamental. Based on all these considerations, the presence of multidisciplinary reference centers for the treatment of neuromuscular pathologies is thus important, and the anaesthesiologist and the intensivist constitute an integral part of the team of care for patients suffering from this rare and extremely complex pathology.”
Anaesthesia and neuromuscular disorders: what a neurologist needs to know
Van den Bersselaar, L. R., Snoeck, M. M. J., Gubbels, M., Riazi, S., Kamsteeg, E. J., Jungbluth, H., & Voermans, N. C. (2020). Anaesthesia and neuromuscular disorders: what a neurologist needs to know. Practical Neurology, practneurol-2020. https://doi.org/10.1136/practneurol-2020-002633
Van den Bersselaar, L. R., Snoeck, M. M. J., Gubbels, M., Riazi, S., Kamsteeg, E. J., Jungbluth, H., & Voermans, N. C. (2020). Anaesthesia and neuromuscular disorders: what a neurologist needs to know. Practical Neurology, practneurol-2020. https://doi.org/10.1136/practneurol-2020-002633
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Article Conclusion:
“It is crucial for patient safety that anaesthetists should share their experience regarding the management of patients with neuromuscular disorders with neurologists interested in these conditions. Systematic documentation and publication of data on the perioperative course in these patients is an important resource to improve safety of anaesthesia and procedural sedation for interventions in the future.11 Equally, it is very important for the neurologist with an interest in neuromuscular disorders to be aware of anaesthetic implications and to discuss possible perioperative complications and the necessary precautions for their patients with neuromuscular disorders.
Anaesthesia for children with neuromuscular disease
Ragoonanan, V., & Russell, W. (2010). Anaesthesia for children with neuromuscular disease. Continuing Education in Anaesthesia Critical Care &Amp; Pain, 10(5), 143–147. https://doi.org/10.1093/bjaceaccp/mkq028
“It is crucial for patient safety that anaesthetists should share their experience regarding the management of patients with neuromuscular disorders with neurologists interested in these conditions. Systematic documentation and publication of data on the perioperative course in these patients is an important resource to improve safety of anaesthesia and procedural sedation for interventions in the future.11 Equally, it is very important for the neurologist with an interest in neuromuscular disorders to be aware of anaesthetic implications and to discuss possible perioperative complications and the necessary precautions for their patients with neuromuscular disorders.
Anaesthesia for children with neuromuscular disease
Ragoonanan, V., & Russell, W. (2010). Anaesthesia for children with neuromuscular disease. Continuing Education in Anaesthesia Critical Care &Amp; Pain, 10(5), 143–147. https://doi.org/10.1093/bjaceaccp/mkq028
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Article Conclusion:
“Children with neuromuscular disease commonly present requiring anaesthesia for diagnostic and surgical procedures. The specific diagnosis is very important to inform a logical plan for the anaesthetic technique, ensuring awareness of possible triggers for serious adverse events. Succinylcholine and volatile anaesthesia should be avoided.
Clinical assessment of functional capacity with a high suspicion of co-existing cardiac or respiratory disease combined with focused investigations allows assessment of risk.
In all cases, there should be close perioperative monitoring and access to postoperative intensive care with ventilatory support if required “
Perioperative Optimization of Patients With Neuromuscular Disorders Undergoing Scoliosis Corrective Surgery: A Multidisciplinary Team Approach
Sedra, F., Shafafy, R., Sadek, A. R., Aftab, S., Montgomery, A., & Nadarajah, R. (2020). Perioperative Optimization of Patients With Neuromuscular Disorders Undergoing Scoliosis Corrective Surgery: A Multidisciplinary Team Approach. Global Spine Journal, 11(2), 240–248. https://doi.org/10.1177/2192568220901692
“Children with neuromuscular disease commonly present requiring anaesthesia for diagnostic and surgical procedures. The specific diagnosis is very important to inform a logical plan for the anaesthetic technique, ensuring awareness of possible triggers for serious adverse events. Succinylcholine and volatile anaesthesia should be avoided.
Clinical assessment of functional capacity with a high suspicion of co-existing cardiac or respiratory disease combined with focused investigations allows assessment of risk.
In all cases, there should be close perioperative monitoring and access to postoperative intensive care with ventilatory support if required “
Perioperative Optimization of Patients With Neuromuscular Disorders Undergoing Scoliosis Corrective Surgery: A Multidisciplinary Team Approach
Sedra, F., Shafafy, R., Sadek, A. R., Aftab, S., Montgomery, A., & Nadarajah, R. (2020). Perioperative Optimization of Patients With Neuromuscular Disorders Undergoing Scoliosis Corrective Surgery: A Multidisciplinary Team Approach. Global Spine Journal, 11(2), 240–248. https://doi.org/10.1177/2192568220901692
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Article Conclusion:
“Spinal deformities commonly develop in patients with neuromuscular disorders causing significant pain and functional impairment. Surgical correction carries a high risk of postoperative complications. A multidisciplinary team approach may reduce the risk of complications and subsequently improves patient outcomes.”
Malignant hyperthermia: still an issue for neuromuscular diseases?
De Wel, B., & Claeys, K. G. (2018). Malignant hyperthermia: still an issue for neuromuscular diseases? Current Opinion in Neurology, 31(5), 628–634. https://doi.org/10.1097/wco.0000000000000592
“Spinal deformities commonly develop in patients with neuromuscular disorders causing significant pain and functional impairment. Surgical correction carries a high risk of postoperative complications. A multidisciplinary team approach may reduce the risk of complications and subsequently improves patient outcomes.”
Malignant hyperthermia: still an issue for neuromuscular diseases?
De Wel, B., & Claeys, K. G. (2018). Malignant hyperthermia: still an issue for neuromuscular diseases? Current Opinion in Neurology, 31(5), 628–634. https://doi.org/10.1097/wco.0000000000000592
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Article Conclusion:
“We conclude that malignant hyperthermia is still highly relevant in neuromuscular disorders. Over the years, the phenotypes possibly linked to malignant hyperthermia have expanded, as have the number of pathogenic variants in known causative genes. However, in spite of recent genetic advancements, the genetic basis of malignant hyperthermia not known in up to 50% of patients. This review provides a useful summary for the clinical practitioner to advise neuromuscular patients with regard to diagnostic testing and perioperative precautions.”
“We conclude that malignant hyperthermia is still highly relevant in neuromuscular disorders. Over the years, the phenotypes possibly linked to malignant hyperthermia have expanded, as have the number of pathogenic variants in known causative genes. However, in spite of recent genetic advancements, the genetic basis of malignant hyperthermia not known in up to 50% of patients. This review provides a useful summary for the clinical practitioner to advise neuromuscular patients with regard to diagnostic testing and perioperative precautions.”
Extubation of Patients With Neuromuscular Weakness A New Management Paradigm
Bach, J. & Goncalves, M. & Hamdani, I. & Winck, J. (2010). Extubation of Patients With Neuromuscular Weakness A New Management Paradigm. Chest. 137. 1033-9. 10.1378/chest.09-2144.
Bach, J. & Goncalves, M. & Hamdani, I. & Winck, J. (2010). Extubation of Patients With Neuromuscular Weakness A New Management Paradigm. Chest. 137. 1033-9. 10.1378/chest.09-2144.
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Article Conclusion:
"Continuous volume-cycled NIV via oral interfaces and masks and MAC with oximetry feedback in ambient air can permit safe extubation of unweanable patients with NMD."
"Continuous volume-cycled NIV via oral interfaces and masks and MAC with oximetry feedback in ambient air can permit safe extubation of unweanable patients with NMD."
Disease-Specific Written Materials:
The following content covers specific types or forms of Neuromuscular Disease (NMD).
Anesthesia in a patient with Charcot-Marie-Tooth disease with pneumothorax: a case report
Kim, J. W., Kim, G., Kim, T. W., Han, W., Maeng, J. H., Jeong, C. Y., Choi, J. H., & Park, D. H. (2019). Anesthesia in a patient with Charcot-Marie-Tooth disease with pneumothorax: a case report. Journal of International Medical Research, 47(11), 5896–5902. https://doi.org/10.1177/0300060519881239
The following content covers specific types or forms of Neuromuscular Disease (NMD).
Anesthesia in a patient with Charcot-Marie-Tooth disease with pneumothorax: a case report
Kim, J. W., Kim, G., Kim, T. W., Han, W., Maeng, J. H., Jeong, C. Y., Choi, J. H., & Park, D. H. (2019). Anesthesia in a patient with Charcot-Marie-Tooth disease with pneumothorax: a case report. Journal of International Medical Research, 47(11), 5896–5902. https://doi.org/10.1177/0300060519881239
| anesthesiainapatientwithcharcot-marie-tooth.pdf |
Article Abstract:
“A 21-year-old man underwent wedge resection for treatment of pneumothorax. This patient had been diagnosed with Charcot-Marie-Tooth disease (CMTD) and had a history of surgical treatment of scoliosis, pneumothorax, foot deformity, and arm dislocation. Additionally, the patient showed signs of muscle weakness and atrophy in the upper and lower extremities.
CMTD is genetically associated with motor and sensory neuropathy and reportedly has an association with malignant hyperthermia or a delayed muscle relaxation mechanism. In the present case, total intravenous anesthesia was performed with a combination of propofol and remifentanil, and rocuronium was administered as a neuromuscular blocking agent. Surgery was performed without delayed muscle relaxation or any other specific intraoperative adverse events.”
“A 21-year-old man underwent wedge resection for treatment of pneumothorax. This patient had been diagnosed with Charcot-Marie-Tooth disease (CMTD) and had a history of surgical treatment of scoliosis, pneumothorax, foot deformity, and arm dislocation. Additionally, the patient showed signs of muscle weakness and atrophy in the upper and lower extremities.
CMTD is genetically associated with motor and sensory neuropathy and reportedly has an association with malignant hyperthermia or a delayed muscle relaxation mechanism. In the present case, total intravenous anesthesia was performed with a combination of propofol and remifentanil, and rocuronium was administered as a neuromuscular blocking agent. Surgery was performed without delayed muscle relaxation or any other specific intraoperative adverse events.”
The Care of Congenital Myopathy: A Guide for Families
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Summary:
"This family guide summarizes the work performed by the International Standard of Care Committee for the Congenital Myopathies published in the Journal of Child Neurology (Ching H. Wang, et al. Consensus statement on Standard of Care for Congenital Myopathies, Journal of Child Neurology, 2012: 27 (3): 363-382). This task was supported by a grant from A Foundation Building Strength (www.buildingstrength.org) and TREAT-NMD (www.treat-nmd.eu).
The Committee was composed of 59 experts from 10 medical disciplines including neurology, genetics, pulmonology, orthopedics, physical therapy and rehabilitation, gastroenterology, nutrition, and speech therapy. A two-step online survey was used to gather information on how doctors around the world care for people with congenital myopathy. A thorough review of published reports was completed to include the most up-to-date information. The group communicated by frequent email messages and periodic conference calls over the course of a year and a half, and formed this consensus recommendation after a 3-day workshop in May 2010 at Stanford University in California.
The purpose of publishing this care guideline is to establish a consistent approach to the diagnosis and clinical care of people affected with congenital myopathy and to identify areas that require additional clinical research to better future care. Visit http://jcn.sagepub.com/content/27/3/363.refs.html to download the Standard of Care document for free."
For surgery-related topics, see pages 13; 34-35; 70-72; and 79-80.
Access this document via individual chapters and in additional languages at https://buildingstrength.org/community/resources-support/.
"This family guide summarizes the work performed by the International Standard of Care Committee for the Congenital Myopathies published in the Journal of Child Neurology (Ching H. Wang, et al. Consensus statement on Standard of Care for Congenital Myopathies, Journal of Child Neurology, 2012: 27 (3): 363-382). This task was supported by a grant from A Foundation Building Strength (www.buildingstrength.org) and TREAT-NMD (www.treat-nmd.eu).
The Committee was composed of 59 experts from 10 medical disciplines including neurology, genetics, pulmonology, orthopedics, physical therapy and rehabilitation, gastroenterology, nutrition, and speech therapy. A two-step online survey was used to gather information on how doctors around the world care for people with congenital myopathy. A thorough review of published reports was completed to include the most up-to-date information. The group communicated by frequent email messages and periodic conference calls over the course of a year and a half, and formed this consensus recommendation after a 3-day workshop in May 2010 at Stanford University in California.
The purpose of publishing this care guideline is to establish a consistent approach to the diagnosis and clinical care of people affected with congenital myopathy and to identify areas that require additional clinical research to better future care. Visit http://jcn.sagepub.com/content/27/3/363.refs.html to download the Standard of Care document for free."
For surgery-related topics, see pages 13; 34-35; 70-72; and 79-80.
Access this document via individual chapters and in additional languages at https://buildingstrength.org/community/resources-support/.
The Diagnosis and Management of Duchenne Muscular Dystrophy: A Guide for Families
| thediagnosisandmanagementofduchennemusculardystrophy.pdf |
See pages 54-55, "Considerations for Surgery."
Practical Suggestions for the Anesthetic Management of a Myotonic Dystrophy Patient
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Included are the following topics:
- Overview
- Key management issues
- Pre-operative management issues
- Intra-operative management issues
- Post-operative management issues Summary
- Addendum 1: List of authors and acknowledgments
- Addendum 2. References
Anesthesia Warning and information for Polio Survivors:
(Shared from the PA Polio Survivors Network)
https://www.papolionetwork.org/-anesthesia-warning.html
(Shared from the PA Polio Survivors Network)
https://www.papolionetwork.org/-anesthesia-warning.html