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DPS is abbreviation for diaphragm pacing system . . . is anyone here trying?
DPS means diaphragm pacing system; Dagmar and duane anecdotally commented on the Amyotrophic Lateral Sclerosis intervention several years ago, but no discussion developed and there does not appear to be any discussion of the intervention otherwise.
The US Food and Drug Administration approved the intervention for use in Amyotrophic Lateral Sclerosis on 28 September 2011 after clinical studies show survival median improves by about twenty moons.
So, I wonder what extent patients consider the intervention?
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17 Replies
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Thanks for bringing this topic to discussion, Having respiratory ALS I am extremely interested in responses. I believe my very prominent Dr. claimed this would not help. Is there conflicting evidence that this works?
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Please google ‘ NIV for ALS’
Apparently worthwhile.
My lung capacity is down to 30% – I had to request NIV – currently in hospital getting peg and had bipap overnight. Makes for easier, slightly deeper breathing.
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i agree, Lisa, NIV is very safe and can help extend life and improve respiratory function. DPS, on the other hand, can add physical stress to an already weak respiratory system, and for some PALS that can shorten life expectancy.
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I don’t think such is shown to be true – it is speculated. There is no known case of actual life reduction reported to the best of my knowledge and belief.
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It dawned on me I ought to have suggested contacting Onders at Cleveland’s University Hospital. They pioneered the intervention and published several papers showing improved survival medians by about twenty moons.
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It seems from what I have read, that for some patients with primarily lower motor neuron respiratory insufficiency, DPS can extend time to respiratory failure. But this is not true for most PALS. You would want to consult carefully with your medical team. Here is an article from Nature Reviews Neurology that indicates DPS can actually shorten life expectancy in some PALS. https://www.nature.com/articles/nrneurol.2015.149#:~:text=The%20patients%20who%20received%20diaphragm,noninvasive%20ventilation%20group%20had%20died.
nature.com
Diaphragm pacing is associated with reduced survival in ALS patients with respiratory insufficiency - Nature Reviews Neurology
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The very brief brief refers to a paper where seven patients abandoned the treatment cohort, four without undergoing the implant but each of these were treated as dead in the analysis even though they were still alive – patients have long bemoaned such analytical practices (if you get a trach you are treated as if you died, even though alive but the practice is much worse than this). It is all but impossible to understand the report’s significance . . . no case of an actually injured patient is profiled that I can find. The other reports indicate cohort survival medians improved by circa twenty moons!
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My case of ALS has mostly affected my diaphragm. My FVC was around 35; dropping from 90 just a few months earlier. I also had to get a peg. From what I’ve read I would not consider this as an option for myself. I do have a NIV and that helps tremendously. I am also on Riluzole, and QALSody. Since starting the QALSody in July, my FVC has increased to 41. I have a lot of faith in my medical team and they have not recommended this or brought it up. I think this would be a case by case situation, especially since no two cases of ALS are identical. There are so many things to consider.
Amanda
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Amada
Excellent, good to hear good news. Blessings
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I thought I would suggest contacting Bedlack at Duke University . . . he is studying reversal cases in patients suffering from Amyotrophic Lateral Sclerosis. They found about fifty such cases, so situation is very rare.
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I have to tell you your logic is very reasonable and chances are you would not be a good candidate for the FDA approved medical intervention . . . if the synapses of the lower motor neurons on your primary breathing muscles will not respond to stimulation the intervention likely would _not_ work. However, they might simply not be receiving signals from the upper motor neurons of your breathing muscles and if so the chance remains the intervention could be valuable in your case. I am surprised the intervention was not considered by your medical care team. Perhaps they have never deployed the intervention in any of their patients? Its certainly not automatic . . . the lead research team on pacing reports nearly twenty percent of patients who try the intervention are found insufficiently responsive during implantation.
Medical care teams are not truly good until they can cure the underlying disorder, as they would probably admit; I wonder what their reasoning was regarding the intervention . . . and its potential application in your case?
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The pacing system does not seem like it causes a natural breath, more like a gasp. Also, I wonder why nobody tries one of those turtle shell type chest cuirass negative pressure ventilators. No trach required. I like Bipap but it cuts into your ability to communicate.
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Quaintance, are you using the pacer?
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Here is a journal paper mentioning the technique, also mentions ALS but does not provide sample cases; I don’t know of any, or any using an actual Iron Lung. I know of a couple of hundred cases involving use of the pacer (DPS).
Cuirass Ventilation: An Alternative Home-Based Modality for Chronic Respiratory Failure
https://journals.sagepub.com/doi/full/10.1177/1084822319875111#bibr20-1084822319875111
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Patrick deployed the pacer intervention and recently exceeded the Texas threshold of 4200+ days; they are the fifty-sixth individual expressing an interest in pacing to have done so and is one of the now twenty-five pacing patients known to exceed this threshold.
http://tinyurl.com/PWLover4200
tinyurl.com
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This article reports a patient who apparently was on ventilator but after DPS implantation no longer needed the ventilator.
Diaphragm pacing system implanted in a patient with ALS
https://pubmed.ncbi.nlm.nih.<wbr>gov/26444327/
Case report
Kotan, et alia Turkey
2016
pubmed.ncbi.nlm.nih.gov
Diaphragm pacing system implanted in a patient with ALS - PubMed
The diaphragm pacing system (DPS) is a life quality improving operation in amyotrophic lateral sclerosis (ALS) patients who need mechanical ventilation or have chronic respiratory insufficiency. This procedure is gaining in popularity, and the number of centers implanting diaphragm pacing … Continue reading
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