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Thread: Opinions rewarded for SCI vent users...

  1. #1

    Opinions rewarded for SCI vent users...

    I recently received the below email from IVUN (International Ventilator User's Network). I replied and stated that I was interested, and that I might be able to get a couple more SCI vent users also. There's a $25 reward for participating in a (maximum length) 1.5 hour conference call. Below is the original email looking for interested people, but since then, it's been determined that there will be two separate conference calls, both on February 19th. There are 1-2 spots available for the 10:00-11:30 a.m. Central time, and 3-4 spots available for the 3:00-4:30 p.m. Central time.

    The reward is actually a $25 gift card to Amazon.com. But it could be good to learn more about the diaphragm pacemaker also.

    Bill Miller


    Do you use a ventilator full or part time? Do you have a spinal cord injury? Do you know someone who uses a vent due to SCI? IVUN is looking for 6 individuals who are willing to participate in conference call with representatives from a company that is seeking your opinions.

    How will it work? After you email your interest to info@ventusers.org, we will send a Pre-Focus Group Questionnaire, with time options for the 1 ½ hour (2 hours maximum) conference call on February 19th and/or February 20th and other relevant materials. The call’s purpose is to gather information to assist the company in making future decisions. Please respond no later than February 13. An honorarium will be provided.

    This is an invitation to participate in the conference call to answer questions from the marketing people of Synapse Biomedical, Oberlin, Ohio, (www.synapsebiomedical.com). The company will pay for the call and provide a $25.00 honorarium. When you are on the call, I encourage you to be straightforward in your answers. Please pass this request along to others. Joan L. Headley for IVUN (International Ventilator Users Network).

    Here is a message from Steven Annunziato, SVP Marketing & Sales.

    Thank you so much for your time and agreeing to provide us your help.

    The purpose of the focus group is for Synapse Biomedical to gain a general understanding about awareness of the technology, concerns with seeking treatment, barriers to seeking treatment so we can focus our efforts to support spinal injured patients. We will be determining whether to:
    1.Expanding patients awareness of the availability of Diaphragm Pacing
    2.Expanding patients understanding about the benefits of Diaphragm Pacing
    3.Educating on the difference from the prior technology and surgical procedure of phrenic nerve pacing
    4.Develop more local program access
    5.Develop programs to support patients travelling to centers.

    Next is a pre conference questionnaire that we would ask you to fill out for us to understand your history and potential roadblocks to obtaining treatment. Please fill in information that you would be comfortable providing. Please complete and email to sannunziato@synapsebiomedical.com or Fax to 440-774-2572.

    -----------------------------------------------------------------------

    Bill here, I'm attaching two versions of the questionnaire. If you can open the Word version, you can highlight the "circle answer" questions and type/dictate the fill-in-the-blank questions, so you can email the questionnaire in. Otherwise, I'm attaching a PDF that can be printed, filled out and faxed. They didn't make the form user friendly, but I tried to.
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

  2. #2
    If you participate, please ask about the options for LONG-TERM vent users. I have a friend who just went through the abdominal approach diaphragm stim procedure only to find that since he had been a vent using since 1978 that his diaphragm has atrophied too much for this new stimulator to work. It was devestating for him to get this news as he had his hopes so raised by the marketing. He had previously been turned down for a phrenic nerve stimulator (in the 1980s) as well.

    (KLD)

  3. #3
    KLD,

    I'm a long-term vent user myself (about 11.5 years) so I will definitely ask about the options, and typical eligibility (i.e. is there a known point where it's been too long to get one's diaphragm working).

    That said, I know they tout that it's a "quality of life" improvement, however, my current opinion is that it would be a step down in my quality of life. Below is a thread that I wrote a short novel on, and discussed this in detail (below the link is the part pertaining to diaphragm pacemaker, etc):

    http://sci.rutgers.edu/forum/showthread.php?t=103228

    From post #54 on the above thread:

    I know y'all are disappointed that your brother was not able to do the diaphragm pacemaker, however I really do not see how my quality of life would improve with a diaphragm pacemaker, and here's why...

    First, let me say that a friend of mine got the diaphragm pacemaker and he loves it, but before getting it (when he was on the vent) he didn't use a speaking valve, and I don't think he learned to initiate breaths on the ventilator, and I also don't think he used a CoughAssist machine instead of suctioning. Why are those things important? The net effect in my case is that unless they have come out with "second generation" diaphragm pacemakers that allow breaths to be initiated, then my quality of life would decrease with the diaphragm pacemaker.

    Why? Because on the vent, I can initiate a breath when I am talking and "run out of air" before I finish my sentence/thought. Using the same simultaneous "pull my chin down & chest up" technique I mentioned above (I actually do a quick version) I can initiate a breath on the vent. The pause between breaths is exactly three seconds if I don't initiate a breath, and without a speaking valve, a vent user can only speak during the time in which he/she is actually receiving a breath (which for me is exactly 1.5 seconds, and of course, the cuff must be deflated and volume should be increased). That is followed by a mandatory three-second pause, which sucks for trying to have a conversation. With the ability to initiate a breath (an action which I'm 99% sure almost anyone who can use their neck muscles should be capable of developing) that lets me shorten the three-second pause. What the speaking valve does, is it enables me to use the entire amount of air that the ventilator gives with each breath.

    The speaking valve is just a brilliant little one-way valve that allows air to flow in easily (inhale direction) but completely seals off the exhale direction. That means the air must all be exhaled out the person's mouth and/or nose--but the effect is that one has some air to speak with when the vent isn't actively giving a breath. So I can speak continuously, as long as I don't try to get real loud. I can get loud when necessary, but the louder one speaks, the more air is required, so I will "run out" of air faster if I have to talk quite loud. But that's when I will initiate a breath, and within roughly one second, I can continue speaking.

    With the diaphragm pacemaker, it is like having a speaking valve at all times (because the amount of air breathed-in can be used for speech) because the person's trach is sealed. What happens without a speaking valve, is some/much of the ventilator breath is exhaled back out the trach & vent circuit before it reaches the person's vocal chords, which are above the trach. Exhaling out the trach & vent circuit is why the pause between breaths is mandatory (when not using a speaking valve) because no air is around the vocal chords, which is also why speech isn't possible with an inflated cuff (the cuff is a little balloon that wraps around the trach like a ring on a finger, and when inflated, it seals the airway and forces all the air into the lungs and forces the air to be expelled via the vent-circuit; I can elaborate on that if interested).

    But, talking with my friend who had the diaphragm pacemaker, he still has to pause if he runs out of air before his chest is stimulated to take a breath. His diaphragm pacemaker doesn't have the ability (or setting) to enable the user to initiate a breath to shorten the pause in between breaths. Consequently, he has to pause occasionally, if he uses up the air given before receiving/taking another breath. I think I talk better than him, when I have my speaking valve on (which is about 15 hours per day for me; it isn't good to use it when sleeping because it essentially negates the in-line humidifying device on my vent circuit, so I get a little dried out; I can elaborate on this and how we re-humidify my lungs & airway also).

    Also, the diaphragm pacemaker is battery operated. They have alarms when the battery gets low, and I think one battery lasts for a couple weeks, and my friend gets batteries delivered regularly. But still, he is dependent on those batteries. I'm dependent on the batteries in my LP-10s also (plus their external batteries) but my vents also run on standard electric power from any outlet, which also charges my batteries. I think that is a little better than only having batteries. Plus, you still have to keep the trach with a diaphragm pacemaker. I'm not entirely sure why, but I suppose it is so that one can be put back on a vent if something goes wrong with the diaphragm pacemaker.

    My friend did get the vent taken off the back of his chair, and he said he doesn't "rock" in his van when traveling nearly as much (I don't rock a whole lot; I usually tilt all the way back and my vent tray actually rests on a slightly elevated platform in my van). My friend also said his sense of smell is much better and taste is better also.

    I truly don't think my ability to taste is deficient (I am able to thoroughly enjoy good food, just like before my injury) but my sense of smell is definitely limited, though I can smell when I really want to (I have to try to take in air through my nose). I usually have no problem smelling when someone is baking brownies or something that I really want to smell, but some of my able-bodied friends are jealous that I can selectively smell (like when they change their child's diapers).

    I also mentioned the CoughAssist as a reason why I don't think getting a diaphragm pacemaker would really improve my quality of life. The reason is because with the CoughAssist, which is used on me about five times a day on average, it is easy and comfortable to expel secretions (whereas I absolutely hated being suctioned--it made me gag, I wasn't receiving air with it, and it didn't seem to be nearly as effective as using the CoughAssist largely in the manner that Shepherd uses it with vent patients, i.e. in manual mode). I can elaborate on that also (and we actually gave away my suctioning equipment about 10 years ago--and I have not had any respiratory issue that required hospitalization ever since I left Shepherd--knock on wood, and thank you to good caregivers & the Good Lord).

    Ok, I think I explained things pretty well. But for more info on the CoughAssist, speaking valve, or even my whole respiratory routine, I'm including my standard signature below. There's a link to my personal website, and what I just mentioned can be found on my "Life with an SCI" page. I designed my website to be a resource for high-level quads and vent users after my family wasn't able to find much info to help me when I was injured--I/we didn't know about CareCure.

    God bless!

    Bill Miller :-)
    C1-2 Quadriplegic with a 206 High Bowling Game
    Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
    My blog: http://powerwheelchairusers.blogspot.com
    Business website: http://www.ikanbowler.com
    Personal website: http://www.lookmomnohands.net
    Last edited by BillMiller823; 02-08-2009 at 06:18 AM. Reason: corrected some dictation errors
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

  4. #4
    I participated in the above conference call with Synapse Biomedical regarding their diaphragm pacing system and learned quite a bit.

    Since I shared above why I didn't think the diaphragm pacemaker would improve my quality of life, and after becoming better educated about it and now thinking it could enhance my quality of life, I will share what I learned and why I feel this way...

    My primary tool to the world is my voice, therefore having the ability to speak as well as possible is very important to me. Consequently, my biggest concern about getting a diaphragm pacemaker would be the perceived "step down" in speech ability. Being able to initiate breaths and use an inline speaking valve while on my vent gives me near-continuous speech. I learned that the Synapse diaphragm pacemaker is not currently capable of enabling the user to initiate breaths--BUT there's a way around that: simply have the breath rate increased. That can provide enough additional air that I don't need to initiate breaths.

    I learned that their diaphragm pacing system better "inflates" a person's lungs than a vent typically does (inflates isn't exactly the word I'm searching for, but I think it gives the proper idea). I think Synapse's Respiratory Therapist (RT) said they have data showing that their diaphragm pacemaker better "stimulates the posterior of one's lungs than typical mechanical ventilation" which I translate as a fuller, deeper breath experienced by the diaphragm pacemaker user over the vent user. The RT also said the better stimulation / fuller breath aids in clearing secretions that may lie against the posterior (i.e. back) side of the lungs, which can reduce infections such as bronchitis or pneumonia. That makes sense. (Although, for me personally, we have been able to prevent such serious respiratory infections, largely due to the CoughAssist machine's ability to keep my lungs clear as I think I describe or at least mention above. That said, I have heard that some vent users do get a severe respiratory infection relatively regularly, like once or twice a year, on average.)

    I think that with the potential for bigger breaths (and thus more air to speak with) and perhaps increasing my breaths per minute, I think my speech might be just as good on the diaphragm pacemaker, if not better, than it is now. I currently receive 13 breaths per minute, but with the potential for larger breaths, 13 might be enough on the diaphragm pacemaker, although I might choose 14 or 15. I learned the Synapse system can have two major settings, like a daytime setting with additional breaths for speech, and a nighttime setting that might be more comfortable for sleep.

    I also learned that if I wanted to use a vent for speech purposes during the day, I could potentially "only" use the diaphragm pacemaker when I'm in bed, sleeping, which wasn't something I thought of previously. That would enable me to talk better in bed because the diaphragm pacemaker is like having a speaking valve in permanently (because like with the valve, all of the inhaled air must be exhaled out one's mouth and/or nose; none escapes out the vent circuit--I can explain this better later, if needed). Anyway, even though I have a cuffless trach which enables me to talk while in bed, I don't use a speaking valve because the valve tends to dry out my airway when I use it during my awake hours, so when I sleep, I try to re-humidify my lungs. But I think I would re-humidify well and a bit more naturally using the diaphragm pacemaker, and have the bonus of better speech during my bedtime hours. More on this if desired.

    I learned the batteries for the diaphragm pacemaker last roughly 500 hours. I recall them saying three batteries (i.e. 1500 hours, which divided by 24 equals 62.5 days--and that would be for continuous 24/7 use) cost about $100. I think they estimated the yearly cost of all required supplies (batteries and connection wires) to be approximately $700, which is considered less than the typical yearly expenditures vent users require. Incidentally, Synapse said that "Medicaid and Medicare automatically approve the use of the diaphragm pacemaker for appropriate patients, and private insurance has followed the same policy" so, basically, if a vent user has an "intact phrenic nerve" then they can get a diaphragm pacemaker if they want one. It's FDA approved.

    I asked SCI-Nurse KLD's question about length of ventilator use perhaps causing too much atrophy to one's diaphragm and the response was that they have someone using a diaphragm pacemaker who was a vent user for 28 years--the key is if the phrenic nerve is intact.

    IMPORTANT! The ONLY true way to determine if one's phrenic nerve is capable of working with the diaphragm pacemaker, is to start the surgical procedure (it's laparoscopic, so it's minimally invasive, so it shouldn't be a "huge deal" if they start the process and find out that the person's phrenic nerve still won't fire). They said that just about any hospital can do a "standard" phrenic nerve test, but it's prone to produce "false negatives" i.e. one's phrenic nerve might still be good enough for the diaphragm pacemaker, but this cannot be determined without starting the procedure. However, I do think that someone could get the "standard" phrenic nerve test, and if a positive test resulted, that should essentially guarantee that someone is a good candidate (i.e. I don't think "false positive" tests are an issue).

    I got to thinking about where that little unit would go (the control system itself) which they said is about the size of a standard Blackberry (handheld computer-phone; I looked up Blackberry's and that's roughly 4.5 by 2.5 inches). They said most people kinda strap it to their torso with I think an abdomen binder, but at least one person customized a different way to safely keep it physically close to the user.

    The Synapse diaphragm pacemaker is not waterproof, but it is "splash resistant" so just don't submerge it in water in and the user should have no issues. They are trying to get longer or waterproof cables so that users can take a shower, but not have the control unit join them.

    There are currently 20 places where the diaphragm pacemaker surgery and setup can be performed (their website needs to be updated, but it shows 12 cities in the U.S. and 3 in Europe, and a couple U.S. cities have two locations). Synapse realized that people would prefer to not have to travel too far from home (it's especially difficult on our families and caregivers) and the shorter the trip, the better (so they will continue to try to be able to offer additional locations).

    Also, the surgery itself typically requires a one day, overnight stay at a hospital. After some instructions, follow-up, etc the next day, the new user should be able to go home. The user will typically start out using the pacemaker for relatively short periods of time, as they both exercise the diaphragm muscle and get accustomed to breathing in that manner. Eventually, if I recall correctly, I think most people who have the diaphragm pacemaker are off the vent 24/7, but everyone is off for at least four hours per day.

    Ok, that is most of what I remember from the conference call. I could try to elaborate on anything above that isn't clear, but their website is: www.synapsebiomedical.com if you want more info.

    Incidentally, there are some significant differences between Synapse's product and their competitor (Avery) who put out something similar, initially in the 1980s--I think that's the correct time frame (though I'm sure certain aspects of theirs have been updated from the initial product). I did a little additional research and I think if I do diaphragm pacing, I'll do so with Synapse. But, please, research it yourself if you're curious to know what the options are.

    Bill Miller
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

  5. #5
    Thanks for your very comprehensive and thoughtful analysis. Wise.

  6. #6
    I was in the opposite call group as Bill, but found that the system is very well thought out. Everything Bill said is correct and the Pacemaker does sound like a good system.

    To date, they said three people have completely removed their trachs after going on the system or down graded to a smaller button type. However, as their web site says, they do recommend keeping a ventilator available in case the system does go bad.

    The system is currently only being marketed to vent users over the age of 18. Those involved are very willing to answer any questions and have had several success stories that can be related to.
    C2/3 quad since February 20, 1985.

  7. #7
    Thanks Trainman for corroborating and adding to the info.

    One potential negative I forgot to mention is that people cannot currently get an MRI while using the diaphragm pacemaker. The RT for Synapse said "people keep making more powerful MRI machines" and (I didn't understand this fully) but apparently to be deemed MRI-safe, they have to be tested by the most powerful MRI machine.

    I would think there could be an MRI strength rating for which it could be approved. But, regardless, since we're supposed to keep our trachs (I hadn't heard about some patients removing theirs, but that's an interesting thought) but if still trached, it would be super simple to use a vent for an MRI.

    The only other potential "negative" I can think of is, I personally like to have my face covered when sleeping (it's the only place I can feel the blankets) but that might not be such a good idea, if I start breathing through my mouth and/or nose again, instead of my neck. I guess I could have my mouth and nose uncovered, and still be comfortably covered.

    I'm thinking of doing it (getting a diaphragm pacemaker) if my phrenic nerve is acceptable (and again, an unacceptable phrenic nerve can only be determined by starting the pacemaker surgery).

    Bill
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

  8. #8
    In case anyone is curious...

    I have a pre-surgery consult on Monday (4/15) to further assess my candidacy for the DPS (Diaphragm Pacing System).

    If it appears to be a go, I still have to get insurance approval.

    But I'll share my thoughts and experiences here.

    No worries.

    P.S. can a moderator perhaps change the thread title to "Diaphragm Pacing Info..."?

    That would be more relevant. If so, thanks.
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

  9. #9
    Senior Member MarkPals's Avatar
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    Thanks Bill, I look forward to hearing what you have learned about it. There have been several ALS patients who have had success with the pacers.

    I don't know if you are interested, but I am listing a couple of threads from Patients Like Me regarding the Diaphragm Pacer.

    Good luck, Bud!

    http://www.patientslikeme.com/forum/show/2178?page=1

    http://www.patientslikeme.com/forum/show/2775
    Veni.Vidi,Velcro...I came, I saw, I stuck around.

    Vidi, Vici, et Veni, et Veni, et Veni...

  10. #10
    very interesting, thanks
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