My father is 78 and was diagnosed with CIDP Jan of 2012. He has undergone IVIG for over a year, and Imuran - he has declined to the point of now on a ventilator. He moved to Florida from Georgia in December, and went into respiratory failure in January 2 days after starting PE. 2 months later after ICU stay in the hospital, his legs are the strongest part of his body [he was wheelchair bound in December] - however, has shown favorable response to this treatment he is still being affected in the right hand with contracture [left hand has contracted over the past year and very weak in that arm] The diaphram paralysis was the symptom that sent him to the hospital resulting in the CIDP diagnosis. They are crediting the disease for the phrenic nerve damage. Is there anything available for help with his diaphragm in order to wean from the ventilator? He is currently at an Acute care hospital....in wean mode...however, it is very slow progress and I fear they will give up, I am sure due to lack of knowledge of this rare disease...any help or advise? I have also been in contact with the GBS/CIDP foundation, and they have been great...each case is different, and it appears my father has the chronic version of this disease...
I regret that I have no expertise or even much general knowledge of CIDP. But, I know it to be a dreadful disease and I am so sorry that you and your father have been subjected to this ordeal. The following is an abstract that briefly describes electrophrenic pacing in a variety of neurologic settings. The reporting physician, Dr. Bach could and should be reached by phone or E-mail, ***@**** , and might prove to be a valuable resource to you and the physicians..
Authors Full Name Bach, John R.
Institution Department of Physical Medicine and Rehabilitation, University of Medicine and Dentistry of New Jersey, B403, 150 Bergen Street, Newark, New Jersey 07103, USA. ***@****
Title Noninvasive respiratory management and diaphragm and electrophrenic pacing in neuromuscular disease and spinal cord injury.
Source Muscle & Nerve. 47(2):297-305, 2013 Feb.
Abstract The purpose of this monograph is to describe noninvasive management of respiratory muscle weakness/paralysis for patients with neuromuscular disease (NMD) and spinal cord injury (SCI). Noninvasive ventilation (NIV) assists and supports inspiratory muscles, whereas mechanically assisted coughing (MAC) simulates an effective cough. Long-term outcomes will be reviewed as well as the use of NIV, MAC, and electrophrenic pacing (EPP) and diaphragm pacing (DP) to facilitate extubation and decannulation. Although EPP and DP can facilitate decannulation and maintain alveolar ventilation for high-level SCI patients when they cannot use NIV because of lack of access to oral interfaces, there is no evidence that they have any place in the management of NMD. Copyright 2012 Wiley Periodicals, Inc.
Following it is another report that may be of interest to you and your father’s physicians. I give the citation and the discussion. This too might be shared with his physicians and consideration given to contacting the authors of both reports. I realize that, unless you are a physician or have familiarity with neurologic disease, these may not be of interest to you, but they might serve to prompt his physicians to consider alternative approaches.
There is another, a surgical technique called Plication of the diaphragm that has been used with some success in persons whose only problem was diaphragmatic paralysis resulting in respiratory failure.
A caveat for any of the above would be that his respiratory physician(s) would have to be reasonably certain that the diaphragm is the main problem and not involvement of other respiratory muscles with CIDP.
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