AANEM Connect

Understanding that using full noninvasive ventilatory support (NVS) settings for sleep ventilation, rather than Bipap, permits patients to extend it into, and throughout daytime hours for up to continuous (C)NVS without going into respiratory failure, requiring hospitalizations, or trach tubes. These patients can also be extubated to CNVS with mechanical in-exsufflation used via tubes and post-extubation to clear secretions to permit definitive noninvasive managment of most NMDs. We now have 18 SMA1s 18 to 30 years old with only residual eye movement, 0 ml VC, also 4 DMDs over 50 years old with 2 never having been hospitalized despite 30 years of CNVS, ALS patients on CNVS for 14 years, and have extubated all 254 simple vent pump failure patients with as little as 0 ml of VC without resort to trach tubes. This perserves QOL, community living, and saves enormous sums of money for nursing care alone. While this approach is increasingly popular in S Amer, Mexico, Japan, and elsewhere, there is no financial incentive for it in the U.S. but the patients invariably appreciate it. The following article and books summarize what can be done. No one ever needs a trach tube for only being too weak to breathe and it can always be avoided as I tell my patients with dystrophies, SMA, SCI, etc., on their first visits and for the next 42 years is some cases.

 Bach JR. Noninvasive respiratory management of patients with neuromuscular disease. Ann Rehabil Med 2017:41(4):1-20. doi: 10.5535/arm.2017.41.4.519.

 Bach JR, Gonçalves Compendium of Interventions for the Noninvasive Management of Ventilatory Pump Failure: for Neuromuscular Diseases, Spinal Cord Injury, Morbid Obesity, and Critical Care Neuromyopathies. Second Issue, Ventilamed.com, 2023, 706 pages, ISBN 978-3-70-2401450.