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    Phrenic Nerve Pacer

    Does anyone use a phrenic nerve pacer or know of someone who does or even did? I'm on a vent and am looking into the possibility. It looks promising but if so, why haven't my doctors suggested it?

    #2
    Hi, my son has a diaphram pacer. This is a little different than the phrenic pacer and alot less invasive as it is done with laproscopic surgery. He had it done at the University Hospital in Cleveland by Dr. Onders. Their # is
    216 844 5797. You should give them a call and find out more about it.

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      #3
      Originally posted by aton
      Does anyone use a phrenic nerve pacer or know of someone who does or even did? I'm on a vent and am looking into the possibility. It looks promising but if so, why haven't my doctors suggested it?
      Aton,

      Phrenic nerve pacemakers have been used since the early 1970's and 1980's to stimulate respiratory activity. When the phrenic nucleus (which is located at C3) is damaged, stimulation of the phrenic nerve may not be sufficient to activate the diaphragm. In such a case, direct stimulation of the diaphragm may be necessary. I know many people who have been on either phrenic nerve or diaphragm stimulators over the years.

      I don't know why your doctors have not suggested to you. I think that it is something that should be considered by all people on ventilators. The reason is that it can used in conjunction with the ventilator. It will rebuild the diaphragm muscle which is one of the largest and most used muscles of the body. It allows people to smell and taste food again. if properly implanted and taken care of, it is safe and lasts for decades.

      The technique has been used since the 1980's, as this paper suggests:
      http://www.ncbi.nlm.nih.gov/sites/en...&dopt=Abstract
      Ann Thorac Surg. 1980 Aug;30(2):118-21. Related Articles, Links

      Neurogenic respiratory failure: a 5-year experience using implantable phrenic nerve stimulators.

      Oakes DD, Wilmot CB, Halverson D, Hamilton RD.

      During the past 5 years, 20 phrenic nerve stimulators have been implanted in 11 patients who were ventilator dependent because of neurogenic respiratory failure. Ten patients had traumatic spinal cord lesions; the remaining patient suffered from a progressive demyelinating disease. There was no operative mortality. Complications included 1 stimulator malfunction and 1 pneumothorax. In spite of adjacent tracheostomies, there were no infections or wound complications. Of the 20 stimulators implanted, 13 initially produced good diaphragmatic function, 2 had fair function, and 5 had little or not function. Three patients became completely independent of their ventilators; 6 became partially independent, thus simplifying nursing care. There were no late complications. As of December, 1979, 7 patients had benefited or were continuing to benefit from phrenic nerve stimulation.
      The following paper published in 1987 already suggest that the technique of phrenic nerve pacing was quite reliable and widely used in London 20 years ago:
      http://www.ncbi.nlm.nih.gov/sites/en...indexed=google
      Phrenic nerve stimulation in normal subjects and in patients with diaphragmatic weakness.
      Mier A, Brophy C, Moxham J, Green M.
      Brompton Hospital, London.

      Phrenic nerve stimulation is often considered to be difficult and unreliable. The time taken for the phrenic nerves to be located and adequately stimulated was measured in 110 subjects, aged 21-89 years, 26 of whom had diaphragmatic weakness; and phrenic nerve conduction time was recorded in 76 of these individuals. Each phrenic nerve was stimulated transcutaneously in the neck with square wave impulses 0.1 ms in duration at 1 Hz and 80-160 volts while diaphragmatic muscle action potentials were recorded with surface electrodes. The time taken to locate either phrenic nerve ranged from two seconds to 22 minutes (median 10s). Both nerves were located in 83 of the 84 control subjects (99%) and in 21 of the 26 patients with diaphragmatic weakness (81%). Mean (SD) phrenic nerve conduction time in the control subjects was 6.94 (0.77) ms on the right and 6.61 (0.77) ms on the left. A weak relationship was found between conduction time and the subjects' age and height. Four out of 24 patients with diaphragmatic weakness had a prolonged phrenic nerve conduction time. Transcutaneous stimulation of the phrenic nerves was not a time consuming procedure, and it was well tolerated, reproducible, and successful in 95% of subjects.
      Diaphragm pacing has been used for many years. Case Western Reserve is one of the leading centers (Source).

      It is covered by insurance as the attached position paper from Cigna indicates.


      Wise.

      Comment


        #4
        Originally posted by aton
        Does anyone use a phrenic nerve pacer or know of someone who does or even did? I'm on a vent and am looking into the possibility. It looks promising but if so, why haven't my doctors suggested it?
        Hi - I know this post is 1 year old, but did you ever go through with getting the pacers? I'm a C2-C3 and I've been pacing full-time since 1981. If you haven't decided yet, I would highly recommend that you pursue the matter. Pacing has made a HUGE difference in my life.

        Chuck

        Chuck

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          #5
          My daughters-pulmonary Doc. has worked with Dr Onders before and has recommended her to this Diaphragm Pacer Program-we live in Columbus-oh. I talked with his nurse and they have a great program-they want my daughter up in cleveland ASAP.
          She is young-25 years old and a recent SCI C3-4-5. I have-heard nothing but wonderful words-results-hopeful in the next two weeks will be in Cleveland! Our fingers crossed and saying prayers!!!
          Last edited by nancygc; 16 Jul 2010, 11:16 PM.

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            #6
            Fingers and toes crossed!!!

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              #7
              Thank You Very Much Linda!!!

              Comment


                #8
                Good luck Nancy. I've been using a pacer since 1991 (my injury was C 1/2, age 15), and I can confirm that it's a vast improvement over being tethered to a vent full time. Better speech, better smell, fewer infections, and no noisy machines and tubes to deal with. I really hope your daughter can get one.

                Comment


                  #9
                  We wish you well and keep us posted.

                  AAd
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                    #10
                    Diaphragm Pacer-Road trip to Cleveland

                    Today IS the DAY we leave Columbus-and go to Cleveland-Cleveland University. It all happened SO fast-everything was arranged in less than a week-Dr. Onders wants to see my daughter-Alix at the hospital ASAP! The LTAC where she stays-worked very quickly-and help make her journey possible. We leave Columbus at 10am today-it will be a two hour drive. The procedure is scheduled for this Friday. I am trying to find for myself-accommodations-a place to crash. The hospital can't promise a roll-out bed or anything for sure-maybe?!?-so I will at least sleep in waiting room-what ever I can find! Keep fingers crossed and say a prayer-that we leave the LTAC on time! And (no fevers) PLEASE!!!
                    Nancy-Alix's Mom
                    Last edited by nancygc; 28 Jul 2010, 8:26 AM.

                    Comment


                      #11
                      Good Luck Nancy! Been wondering how things are going for you and Alix. Glad things moving along.
                      I take a large tote with one of those small velour blankets if I think I will end up in a family room or if they are crowded some other nook.You can roll it tight so does not take much room. I use it for a pillow or to cover up with. I became very creative in finding places to squat. I'm sure you know the drill.
                      Is she going by ambulance or is she able to ride with you? How is she doing otherwise?
                      I am not sure why Dave was not a candidate for a pacer. When he left rehab he was breathing on his own with no trachea, but within months he needed a trachea as could not get his secretions up and got pneumonia.
                      Send me a PM if you like.

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                        #12
                        How did it go with the pacer?

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                          #13
                          I love mine!!!!!!!......no longer vent "dependent".

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