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Thread: From Vent to Diaphragmatic Pacing System (DPS)...

  1. #61
    Sorry to hear about your dad, but is his vent use due to SCI? Right now, the system I use is only FDA approved for individuals with SCI.
    C2/3 quad since February 20, 1985.

  2. #62


    We're in Canada and it was approved by Health Canada for diaphragm dysfunction (similar to FDA). His situation is quite unique in that he has a stroke but is functionally a spinal cord injury due to the location of the stroke. His accident years back dissected out his blood supply to his spinal cord/lower brain stem but we weren't told that at the time.

    He is currently pacing 3 -4 times a day, 45minutes to 1 hour, but I think it might be uncomfortable or difficult as he really doesn't like to do it, but I'm not sure why.

    What was your experience? Is it uncomfortable?


  3. #63


    He actually has a DPS, implanted in July 2010 (Dr. Onders came up to Kelowna, BC, Canada to train the surgeons here). The difficulty is Dad is limited in communication ability (that's another post) and doesn't seem to like the pacing but I can't figure out why. Thought if I could get some idea about others experience I might be able to better help him.



  4. #64
    Hi Tracey, I understand your frustration that your father can't speak. My husband has gone several months straight (in the past) with no voice and some days is not able to wear his speaking valve.
    It was hard on him emotionally and he sometimes just closed into himself. He hated the letter board.
    I can't answer your question, but understand how hard this is for a family.
    Last edited by LindaT; 02-20-2011 at 09:28 PM. Reason: clarify

  5. #65
    It is fairly uncomfortable at first, especially the switching back and forth from a positive pressure system like a vent to the negative pressure of muscle contraction. I have an older pacer style, so I'm not sure if this applies, but once a year it gets checked to make sure that the absolute minimum of current necessary is being used to stimulate the muscles. That makes for the smoothest and least jarring contraction. Have they tried adjusting the settings at all? How is his oxygen saturation on the pacer compared to the vent? What about volumes?

  6. #66
    I can't say I experience any discomfort, at least not since it was set. Getting the rate set at first was uncomfortable, my muscle reacted pretty badly to the stimulation and my lungs hurt. After we got everything set to my comfort level though, it was fine.

    Using pacing vs. vent is very different, one you're breathing 'normal' and the other you're just getting air pushed in. For me, going back and forth isn't a problem or something I really notice. With a cuffed trach, I would see it being uncomfortable.

    Having air pulled in via trach would cause the balloon and throat to be pulled on. This would likely hurt and not be a good experience. For your dad, I would concentrate on the need for the cuff first, getting it deflated and allow speech. The pacer would come well after that in my opinion.
    C2/3 quad since February 20, 1985.

  7. #67
    Thanks for the great feedback! Dad not speaking is his greatest challenge and one we hope to start to address in the next few weeks. When in hospital it was drilled into his head that if the cuff came down he'd get a pneumonia and die if the cuff came down. Not true, but problematic. Dad does have a fair bit of secretions and requires significant amounts of suctioning (sometimes 60+ passes a day) and cough assisting. If not managed effectively he will desat into the mid 80s and he is monitored continuously. His secretion volume is about 100 -200mL but I've no way of knowing if that is excessive or not (and nor do any of the doctors!). We also suspect that he had a lesion under the last trach cuff as we downsized to a shiley 6 from a portex suctionaid 8 and now have bleeding and cuff down was very uncomfortable for Dad (from in the airway not granulomas around the site). We are going to try botox again to see if we can reduce the oral secretions then try taking the cuff down.

    Can anyone share some tips on talking? Dad has had great difficulty the few times we've tried despite high volumes and rate-a word here and there, very croaky. We're hoping the smaller trach helps . He can also control his diaphragm a bit as he breathes over the pacer and the vent all the time.

    In reality all this should have been done in ICU but there was no desire to do so and we felt it best to try in a more supportive home environment.

    Thanks again for all your help.


  8. #68

  9. #69
    Hi Tracey,

    Sorry for the delay replying.

    Does your Dad have a speaking valve (e.g. Passy Muir Valve = PMV)?

    IMO, it's the biggest help for speaking on a vent, and it can be used with the DPS also.

    Tips wise, ask your Dad to try "humming" (i.e. vibrate his throat, like saying "mmmmmmmmmm") when the cuff is deflated and he's receiving a breath. That's a good way to kind of "warm up" one's voice and get ready to talk. See how long he can sustain the "hum" and also try counting quickly, "1-2-3..." etc. just to try to increase his ability to use the time that he has air surrounding his vocal chords. The PMV increases that time.

    I've never heard of the inflated cuff being so critical to survival [EDIT: at least not once someone is stable, especially post rehab, etc] but I'm not a doctor, nor am I familiar with your Dad's precise situation. That said, my cuff was deflated permanently within a short time of coming home from rehab 13.5 years ago, and since we never inflated it, I eventually got a cuffless style trach (I've used a Shiley DCFS No. 8 for probably 10+ years now).

    The key to not getting pneumonia (IMO) is to not let secretions stay in him long enough to become problematic (i.e. grow bugs) and the CoughAssist is a HUGE reason why I believe that I've been able to avoid such respiratory infections. I wrote in-depth about exactly how we use the CoughAssist on my website here:

    There are many knowledgeable people on here, so please write back with any questions.

    God bless! :-)

    Bill Miller
    Last edited by BillMiller823; 02-24-2011 at 01:29 AM. Reason: Clarify inflated cuff statement
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  10. #70
    Hi Bill,

    Thanks for the advice! The cuff is a big issue, but we're working on it. Dad does have a Cough-Assist machine and it works wonders. How do you use it with a cuffless trach? With Dad we use it on his trach with oxygen and then suction out his secretions through the trach (in conjuction with exhalation mode on the machine) with a sterile in-line suction setup. Unfortunately he needs it A LOT and we are working on that issue regarding his secretions. Personally I believe when the cuff is down he'll evaporate some of the secretions and will have less aggravation from the trach that may be contributing to the problem, but we'll see.

    We do have a PMV, but again it has been difficult as the cuff down was very uncomfortable and he really had no ability to vocalize (a word or two at best) which was frustrating. We downsize the trach to a 6 and are waiting for botox to manage the secretions. Hopefully we'll be able to try again in the next few weeks so I am sure I will have more questions for you!


    We are currently trying to get a portable machine from Italy...anyone have any experience with the Pegaso (and how did you get in the country?)

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