6 patient evaluations for Diaphragm Pacing Implant

May 22, 2018 (Started Aug 13, 2008)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Effectiveness
    Major (for Participate in clinical trial)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 90 min Daily
Advice & Tips: Probably why I am still breathing without assistance 9/22 18 10 years since inplant. 12.5 Years total
Side effects: difficulty speaking when machine is on

Jan 1, 2012 (Started Aug 13, 2008)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 90 min Daily
Side effects: difficulty speaking when machine is on

Oct 28, 2009 (Started Aug 13, 2008)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 90 min Daily
Side effects: difficulty speaking when machine is on

Apr 4, 2009 (Started Aug 13, 2008)

  • Effectiveness
    Moderate (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 90 min Daily
Side effects: difficulty speaking when machine is on

Jan 27, 2009 (Started Aug 13, 2008)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (difficulty speaking when machine is on)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 90 min Daily
Advice & Tips: Has improved my FVC
Cost: < $25 monthly
Side effects: difficulty speaking when machine is on

  • 4 helpful marks

Apr 22, 2014 (Started Apr 11, 2012)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Usually
  • Burden
    A little hard to take
Dosage: 10 hr Daily
Advice & Tips: Stopped because I don't want my breathing muscles to outlast my hands/swallowing.
Cost: < $25 monthly

Dec 3, 2012 (Started Apr 11, 2012)

  • Effectiveness
    Moderate (for amyotrophic lateral sclerosis)
  • Side effects
    Moderate (breathing difficulty, difficulty speaking when machine is on, anxious mood)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 14 hr Daily
Advice & Tips: After a trip to Maui where I found it difficult to relax, I realized there is a general level of discomfort and anxiety when I have the pacer on. On a trial basis, I'm cutting my usage to about 14 hours/day, from 6pm-8am. So far, after about a week of this usage I am feeling better during the day.
Cost: < $25 monthly

Aug 30, 2012 (Started Apr 11, 2012)

  • Effectiveness
    Moderate (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (breathing difficulty, difficulty speaking when machine is on, anxious mood)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 23 hr Daily
Advice & Tips: I now have the pacer on about 23 hours per day. I'm no longer feeling the need to shut it off for an hour or so like I was a couple months ago. I would say that I've finally acclimated to it. One month ago at ALS clinic my FVC and MIP measurements were both up, to 73% and 47 respectively. I take this as a sign that the DPS is helping to stabilize my breathing ability. (Perhaps also I'm getting better at taking the test!) All costs except a $100 hospital co-pay are paid by my Medicare HMO. Replacement batteries, cables, and connector bandages are also covered, at 100%.
Cost: < $25 monthly

Jun 18, 2012 (Started Apr 11, 2012)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    Moderate (breathing difficulty, difficulty speaking when machine is on, anxious mood)
  • Adherence
    Usually
  • Burden
    A little hard to take
Dosage: 16 hr Daily
Advice & Tips: My setting were last increased on 5/23/12. Now it wears me out. I try to have the pacer on all day and night but my breathing muscles tire and I need to turn it off for a while and/or use my bipap more during the day. So my pacer usage is down from 23 to about 16 hours/day. And my bipap usage has increased to about 14 hrs/day. I will see the neurologist and DPS medical team on Wednesday and I'm going to request my pacer settings be reduced to the level they were 4 weeks ago. I'm thinking the setting is too high now. I sleep very well with the pacer going though. I wake rested and comfortable and just want to keep lying there in comfort. My breathing syncs with it while I'm asleep but during the day it doesn't and that may be part of the problem. Does it work? This is the big question and I can't answer that any more than I can answer whether Rilutek works. It hasn't made my breathing better but it's only supposed to slow the progression. I had a PFT done on 5/29/12 six weeks post-op. My FVC had previously been on a steady pace of -4 points/month but actually increased from 49% in March to 53% in May. But my MIP decreased from 48 to 37 in the same time period.
Cost: < $25 monthly

Apr 24, 2012 (Started Apr 11, 2012)

  • Effectiveness
    None (for amyotrophic lateral sclerosis)
  • Side effects
    Moderate (breathing difficulty, difficulty speaking when machine is on, anxious mood)
  • Adherence
    Usually
  • Burden
    Somewhat hard to take
Dosage: 16 hr Daily
Advice & Tips: I've only had the pacer implanted just under two weeks ago. I'm experiencing some perhaps typical adjustments. - 1. Learning to shower and change the dressing, 2. Getting used to the feel of it, 3. Occasional problems with the cable getting tugged on. I don't see any benefit yet. If anything, breathing is a little more labored than it was before surgery.
Cost: < $25 monthly

  • 4 helpful marks

Sep 30, 2011 (Started Oct 29, 2010)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 12 hr Daily
Advice & Tips: I have been using the pacer now for about a year. Over that time, I have sent the unit back to University Hospital in Cleveland several times to "tweak" the parameters to allow for maximum benefit with no discomfort. Currently, I have the pacer fairly optimized to me, and I use it approximately 12 hours per day while I am sleeping. To date, I have experienced very favorable results. My FVC scores over the last year have been very steady as a result of using the pacer daily. Now that it is FDA approved for use in ALS patients, I would highly recommend considering this device. Once the wires are implanted, it is very easy to use and has proved to be very beneficial and has improved my quality of life significantly.

Nov 30, 2010 (Started Oct 29, 2010)

  • Effectiveness
    Slight (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 12 hr Daily
Advice & Tips: I had the pacer along with a PEG tube implanted about one month ago. The procedure itself was fairly painless and recovery time was minimal, only about a week. The surgery for the pacer is a orthoscopic procedure where only 4 small incisions are made in the abdomen. The wires of the implant come out of the body just under the breast and are attached to a small plug which is taped to the body just under the breast. The pacer is actually an external device which is attached to the plug when using it. I use my pacer approximately 16 hours per day. I use it primarily through the night with no discomfort. I am hoping that the use of the pacer allows me to keep my diaphragm muscles from atrophy. Time will tell.

  • 6 helpful marks
Last updated:
Showing 3 of 6 patient evaluations for Diaphragm Pacing Implant