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

  1. #21
    Since I wrote last week of my surgery schedule, a lot has gone on. All as planned, testing on Friday and surgery Monday, so this may get lengthy.

    Surgery to implant the Diaphragm Pacemaker System (DPS) is not available in Iowa. Therefore, I went to Northwestern Hospital/Rehabilitation Institute of Chicago (RIC) in downtown Chicago. Initial paperwork and testing were done at RIC on Friday, November 12.

    This was where I first learned that the DPS is not a fully approved FDA device, it is an FDA humanitarian device. If I'm understanding correctly, this is basically the transition stage from initial FDA approval for testing to being fully approved. After enough cases have been successfully studied, then full FDA approval would be given. However, since the number of people who need this device is small, it's doubtful that it will ever get full FDA approval. Due to this, I don't see government funding such as Medicare approving surgery and use of the device.

    In order for the DPS to work, the phrenic nerve must be intact. Northwestern/RIC has been doing DPS surgeries for over two years, but had only done six of them prior to mine. Therefore, several processes were attended by several interns and students, including testing of my phrenic nerve. Testing consisted of being hooked up to monitors on specific places on my chest and someone with their hand on my lower chest to feel my diaphragm moving. A slight electric jolt was then given to the nerves in my neck by a hand held probe, which, to me, resembled a smaller version of a cattle prod.

    The jolt results in muscles in the area jerking and the nerve to stimulate the diaphragm. This was done several times on bother sides of my neck, with my head and shoulders jumping each time the test was given. After about 20 minutes of testing, it was determined my phrenic nerves were intact and that the diaphragm was reacting. About half of my body that I can feel was very sore at this point, so I was glad to be finished with positive results.

    On that Friday, my parents and I had arrived at RIC around 12:45 in the afternoon. In the span of about three and a half hours, we met at least five different doctors and several other people. Scheduling was very well done as there was barely a five minute break at any time. Except for the one doctor who couldn't go on enough about my "ancient" equipment and why hadn't I upgraded, everyone was very professional and knowledgable in their area of expertise and in SCI.

    I was told to arrive at Northwestern Hospital at 7:00 Monday morning and that I would be the second DPS surgery that day, so number 8 in total DPS implants there. At 11:00, I was taken back to the OR and woke up in the ICU about 1:00. As a vent user, being put in the ICU is common as the nursing staff is familiar with vents. I believe that I would end up in the ICU for a hangnail if I was admitted admitted for such a thing.

    The actual surgeon was never met by myself nor my parents, just those who were also in the OR, including a representative from Synapse, the DPS inventor. This past June, I had emergency surgery while on my annual volunteer week to fix a kinked bowel. There was concern that scar tissue from that surgery would interfere with the DPS implantation, but it turned out not to be an issue. However, it was found that growing up with scoliosis resulted in a few of my organs not being in their normal position. This required the surgeon to place the exiting wires from my diaphragm lower in my chest than we had wanted.

    Five hours after surgery was the first test of the device when I was awake. It had been tested during surgery and I was able to bring in 650 liters of air at full strength. With the initial testing after surgery, my chest and shoulders shook and spasmed rather severely with the first few pulses of the machine. The volts given were reduced until the spasms decreased to a tolerable level.

    Per my request, I stayed at RIC an extra day after being in Northwestern ICU overnight. Patients are generally sent home the day of or day after surgery, but I wanted extra training time since I live several hours from the Chicago area. Tuesday consisted of a few short pacing sessions, times of using the DPS instead of the ventilator. With most sessions, my oxygen saturation was monitored and how my body reacted. I was told that it's common to start off with just a few short minutes and to stay connected to the vent.

    With each session, the reactions from my body decreased, and the breathing appearing more regular. I started home from RIC late Wednesday morning, pacing as I could during the trip back. It is now nearly noon on Saturday as I write this, yesterday consisted of eight pacing sessions totaling just under 2.5 hours. I have done two today so far with a total of about 1.25 hours.

    After 25 years on a vent, this is definitely a new and different experience. I have already noticed my sense of smell has increased and am learning what positions allow for better breathing. At this point, I don't have the stamina to be able to do much while pacing and maintain O2 sats above 93. It will take several months before I can go all day without the vent, but I have progressed much faster than I expected. My speech is clearer when on the DPS, but I'm not able to continue without hesitation when getting a breath. I also expect this will become better as I become more familiar with this form of breathing.

    For those considering having the DPS surgery, I'm reserving recommendations until I know more and am more familiar with it. I have a long road ahead, but it has started well and I look for it to continue.
    C2/3 quad since February 20, 1985.

  2. #22
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    This is exciting trainman - I had no idea! How gratifying it must be to finally have something different - something that resembles progress! I can't wait to hear about your improvements!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #23
    Wonderful Trainman, hope you have complete success. Sounds great so far.

  4. #24
    Hi Trainman, Thanks for the update. So far so good by the sounds of things.
    I'm really excited for everyone on a vent that this will help.
    It has to be scary for you and your family too.
    My husband struggles every day with breathing issues, but at least he only uses the vent at night or for a rest during the day. We don't leave without a suction machine also have a cough assist.
    I don't think people that don't have these issues know how fortunate they are.
    Sending you my best wishes!

  5. #25
    GREAT info about your DPS experiences Joel, thank you!

    I'm so glad the DPS seems to be working well for you.

    I have pre-surgery consults setup with the two surgeons (the DPS surgeon, and cardiac pacemaker replacement surgeon) this Tuesday, November 23rd. So I hope to have a surgery date set soon.

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

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

  6. #26
    Quote Originally Posted by LindaT View Post
    It has to be scary for you and your family too.
    My husband struggles every day with breathing issues, but at least he only uses the vent at night or for a rest during the day. We don't leave without a suction machine also have a cough assist.
    I researched it quite a while before getting it implanted, along with Bill. My parents were more unsure than me, but that's not unusual.

    When leaving the house, I also take my portable suction with me, even though I rarely use it. I tried the cough assist while in the hospital after last week's surgery, but it seemed to work backwards for me. The small amount of "gunk" in my lungs that I could feel just got shoved further down instead of coming up.

    Glad to hear you have dates setup Bill, you and I have been working on this for quite a while.
    C2/3 quad since February 20, 1985.

  7. #27
    Unfortunately we use the suction a lot. Usually the cough assist if it is a bad morning and the Vest twice daily along with a quad cough here and there. Nebulizer a few times a day as needed.
    He is on a 1000 liter on vent at night. I think that is what is keeping the lower lobes from sticking.
    He has been out of the hospital after pneumonia since Aug 09. No one is really supervising this so we fly by the seat of our pants.

  8. #28
    Linda, we gave away my suctioning equipment probably 12 years ago (I've been injured and home 13+ years). All we use is the CoughAssist machine for secretion removal (probably 5-10 times a day on average). But we also do some maintenance with sterile saline bullets and also a twice daily nebulizer with acetylcysteine solution 20% (generic Mucomyst).

    It took me a while, but I finally wrote up the details of exactly how we use the CoughAssist machine, and I also have an overview of my care (including my full respiratory routine) both of which are on this page of my website:

    But getting back more to the DPS topic of this thread, I hope to have a surgery date in January or February. I have a fairly short update on my blog about where things stand, and also what the doctors are actually going to do:


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

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

  9. #29
    This week will be one month since I had surgery for the DPS implant. The transitioning has gone well so far, especially during the week when I have more assistants.

    Two days ago, I was able to go for over ten hours total, with one session going for five hours. Both of these times are current records for me. Sitting in my chair is not as accomplished yet, but I have gone for an hour while sitting. It helps a lot to tilt back partially or completely and get better breaths.

    By the end of December, I'm looking to send in my control boxes and have them give me a little higher jolt. This should allow for deeper breaths and therefore further improvement on oxygen stats while pacing.
    C2/3 quad since February 20, 1985.

  10. #30
    Excellent news! Keep me posted.
    People should not take breathing for granted. I don't any more.

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