Diaphragm Pacing Implant Treatment Report

Category: Equipment

Most Popular Types: Neurx Diaphragm Pacing System

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What is Diaphragm Pacing Implant?

An example of Diaphragm Pacing Implant

The NeuRX RA/4 System is a system designed to help patient’s breathing by stimulation of their diaphragm muscles. The stimulator provides repetitive electrical stimulation to the implanted electrodes to cause the patient’s diaphragm to contract and help the patient to breathe.

Synapse Biomedical Inc.'s Diaphragm Pacing Implant site

Reported Purpose & Perceived Effectiveness

Reasons and Perceived effectiveness
Perceived Effectiveness
Purpose # of patients # of patients with evaluations
Major
Moderate
Slight
None
Can’t tell
ALS (Amyotrophic Lateral Sclerosis) 28 13 Efficacy_major Efficacy_moderate Efficacy_slight Efficacy_none Efficacy_cant_tell
Shortness of breath (dyspnea) 3 1 Efficacy_moderate
Participate in clinical trial 1 0

See all 31 patients currently using Diaphragm Pacing Implant

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Reported Side Effects

Side effects as an overall problem

Severe
 0
Moderate
 3
Mild
 3
None
 9

Commonly reported side effects, conditions, and hospitalizations associated with Diaphragm Pacing Implant

Hospitalization 14
difficulty speaking when machine is on 4
Breathing difficulty 2
None 1
Pain 1
Electric shock sensations 1
See all 8 reported side effects ▼ See top 6 reported side effects ▲

Reported Schedules

Frequently reported dosages based on patients currently using Diaphragm Pacing Implant. See all 25 dosages ►

  daily 4 hr daily 8 hr daily 10 hr daily 12 hr daily 18 hr daily 23 hr daily 24 hr daily 90 min daily 240 min daily
  5 Number of Patients: 5 2 Number of Patients: 2 2 Number of Patients: 2 3 Number of Patients: 3 4 Number of Patients: 4 1 Number of Patients: 1 3 Number of Patients: 3 2 Number of Patients: 2 3 Number of Patients: 3 1 Number of Patients: 1  

Reported Stop Reasons

Why Patients Stopped Using (multiple reasons could be selected)
Reason # Patients Percentage of patients
Did not seem to work 1   Did not seem to work: 33%
Doctor's advice 1   Doctor's advice: 33%
Side effects too severe 1   Side effects too severe: 33%

See all 3 patients who’ve stopped using Diaphragm Pacing Implant

Reported Duration See details about how long patients take this treatment ▼

How Long Current Patients Have Been Using Diaphragm Pacing Implant

A bar graph

0-1 month 1-3 months 3-6 months 6 months-1year 1-2 years 2 years or more
0
0
0

How Long Patients Used Before Stopping

A bar graph

0-1 month 1-3 months 3-6 months 6 months-1year 1-2 years 2 years or more
0
0
0
0

Reported Adherence, Burden & Cost See details from patient evaluations ▼

Adherence

Taking treatment as prescribed

Adherence of Diaphragm Pacing Implant

Always
 10 67%
Usually
 3 20%
Sometimes
 1 7%
Never
 1 7%

Burden

Difficulty being on treatment

Burden of Diaphragm Pacing Implant

Very
 1 7%
Somewhat
 3 20%
A little
 4 27%
Not at all
 7 47%

Cost

Paid out of pocket

Cost of Diaphragm Pacing Implant

$200+
 4 50%
$100-199
 0 0%
$50-99
 0 0%
$25-49
 0 0%
< $25
 4 50%

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6 patient evaluations for Diaphragm Pacing Implant

Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Apr 11, 2012)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Dec 03, 2012 14 hr Daily Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate ModerateModerateModerateModerateModerate AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Aug 30, 2012 23 hr Daily Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Jun 18, 2012 16 hr Daily ?Can't tell ModerateModerateModerateModerateModerate UsuallyUsuallyUsuallyUsuallyUsually A littleA littleA littleA littleA little
Apr 24, 2012 16 hr Daily Led_efficacy_1Led_defaultLed_defaultLed_defaultNone ModerateModerateModerateModerateModerate UsuallyUsuallyUsuallyUsuallyUsually SomewhatSomewhatSomewhatSomewhatSomewhat
Date
Dec 03, 2012
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
Date
Aug 30, 2012
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
Date
Jun 18, 2012
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
Date
Apr 24, 2012
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
  • Icon_thumb_on 2 helpful marks
Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Aug 13, 2008)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Jan 01, 2012 90 min Daily Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Oct 28, 2009 90 min Daily Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Apr 04, 2009 90 min Daily Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Jan 27, 2009 90 min Daily Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways SomewhatSomewhatSomewhatSomewhatSomewhat
Side effects:
difficulty speaking when machine is on
Date
Jan 27, 2009
Advice & Tips
Has improved my FVC
Cost
< $25 monthly
  • Icon_thumb_on 3 helpful marks
Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Oct 29, 2010)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Sep 30, 2011 12 hr Daily Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Nov 30, 2010 12 hr Daily Led_efficacy_2Led_efficacy_2Led_defaultLed_defaultSlight NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Date
Sep 30, 2011
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.
Date
Nov 30, 2010
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.
  • Icon_thumb_on 4 helpful marks
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