Tom (tmasters) on the forum has the diaphragm pacer. Here is one post that he wrote about it last April. He may jump in and see your post and add new comments.
I had the Diaphragm Pacing System (DPS) implanted on Wednesday April 11 and I thought I would share my experiences here for those who are interested. While researching for my own decision I soaked up everything I could find here and elsewhere on Al Gore's invention but I still wished there was more detail available. So I realize this is rather lengthy and the subject matter is interesting to only a small percentage of this group. If you are not part of this small percentage, I apologize and feel free to hit Back on your browser, haha.
I was happy to read the news at the end of September 2011 that the DPS had been approved by the FDA for use in ALS on a humanitarian device exemption. Happy but skeptical. I wanted to know more.
At my next clinic visit in October I asked Dr. Mozaffar, my neurologist at UCI, about DPS and whether it's worth consideration. He said to be patient, that they were trying to get a local surgeon trained in the procedure, and that he would keep me posted. My FVC was 68% at the time.
In January my FVC was re-measured at 57%, and Dr. Mozaffar submitted a referral through my insurance company to consult with the neurologist Dr. Tsimenerov (“Dr. T”) at Cedars-Sinai in L.A. They are the only trained DPS surgical team on the west coast.
Wheels turn slowly with a Medicare HMO. The referral to Cedars was contingent on two test procedures required to screen out DPS surgical candidates with poor phrenic nerve conduction. I had a full pulmonary function test done, much more elaborate than the usual spirometer test, but which reported my FVC at 49% on March 12. I also had a “sniff test” which is like a video chest x-ray to measure my diaphragm muscle movement while breathing. Once these two tests were completed I was accepted to Cedars-Sinai ALS clinic to see Dr. T. My visit was scheduled for March 21.
Dr. T and his team of fellows reviewed my test results and performed a full neurological exam. They also asked questions about my smoking history, family health history, my non-ALS health state, etc. They implied that there are more PALS interested in the procedure than they have the capacity to perform them. I almost felt like I was on a job interview.
The last thing they did was a specific EMG nerve conduction test on my phrenic nerve. I've had a couple EMGs before, but this one was very uncomfortable by comparison. The electrodes are placed on the side of my neck (they test both sides) and pressed VERY hard into the neck during the electrical stimulus. The shock was tolerable, but the pressure was painful. The sadistic doctors took turns and the test was repeated about 50 times on each side with slightly different positioning and different amplitudes. At one point I taunted them to “crank it up” to lighten the mood, and got a few chuckles. I could tell they weren't getting the ideal result with me, but they sure worked at it! Finally they were done, and said that my nerve conduction was good but that the diaphragm muscle shows some signs of atrophy. However, I apparently “passed” the test, and was referred to speak to the surgeon and the pulmonologist.
I met with the surgeon (Dr. McKenna) on April 3 and the pulmonologist (Dr. Elsayegh) the next day. They explained that 4 laproscopic incisions would be made in my abdomen. During the procedure they would test my diaphragm in various places and with a fairly strong current to verify that the muscle could be sufficiently contracted with the stimulus. But I would be sedated so I wouldn't feel it. They warned me that in the event that the muscle would not respond they would simply close up and not install the DPS. So far they had done only 20 procedures but it was not a complex operation. Before I could even say “let me think about it” surgery was scheduled for April 11. Here we go!
I arrived at the hospital at 6:30 am. My wife and in-laws came to help and for support. The pre-op team told me what to expect: they would wake me quickly while still intubated and vented, and make sure I could breathe on my own before removing the tube. They said it would be unpleasant and I would want the tube removed. Also said some patients have to remain on a vent for several hours or longer. (Gasp!) I must have been heavily sedated and fortunately don't have any memory of the tube in my throat.
I remember being rolled into the O.R. The music filled the room and the lighting was low, and it was cold. I recall being transferred to the table. I said a prayer. I looked at the clock and it said 8:26 and I started feeling the drug work...it happens very quickly. I dreamed but don't remember what; just that it wasn't unpleasant.
My next memory was around 10:30. I was apparently in recovery and they were setting up bipap with oxygen. Well, I normally use bipap all night long and a couple hours in the evenings. But now in recovery, even while on bipap I was struggling with every breath. It was very unpleasant! I didn't say anything about it though because I didn't want them to intubate me again. I'm sure they were monitoring my stats closely but not what was in my thoughts. I was in recovery for about an hour this way, then they wheeled me into the ICU while they bagged me (no portable bipap). It was around 3pm that I felt well enough to talk and joke with people...that's my measure of when the breathing struggle subsided. God was with me, and I looked to Him for strength. I'm a big baby on my own.
I spent the night in ICU and was released the next day. I was on bipap all day of the surgery and the whole night (as usual for me) and am still, three days later, finding it difficult to breathe when not using bipap. Deep breaths are uncomfortable. There is this feeling of muscle soreness in my breathing muscles. It feels like I did way, way too many sit-ups. I really never had much pain from the incisions. A little soreness in my throat from the tube. But I've only taken over-the-counter medications for the pain. Not even my friend Jack has paid a visit, haha.
The pulmonologist and neurologist came at 5pm on the afternoon of the surgery to set up the pacer. When they connected the machine, I made exaggerated twitching motions all over, haha. The pulmonologist told me, laughing, that “we don't joke in the ICU”. Okay, okay, my bad. They started the pacer with a very low level and gradually increased it until it was intolerable, then backed it off a little. Only they can do the adjustments. The whole thing took half and hour and I had it going from 5:30 until 7:30. It feels like electric shocks of course, but you learn to ignore them after a time. The next day they came and increased the level before I was released to go home. I am supposed to return weekly for readjustment, turning to bi-weekly, and then monthly. I am supposed to pace at least 2 hours a day but can go longer if I choose. I'm trying to work up to it... so far today it's been on 7 hours.
They told me to make sure I don't get the wires or the connector wet. And the way they taught us to do the dressing exposes the edge a 2x2 gauze pad covering the wires. I'm supposed to change the dressing every 3 days. So, showers are a challenge to keep this thing dry. We are experimenting. This is either a temporary dressing style or I may just have to figure something else out. I had read previously that there was no problem bathing or swimming. I go to Cedars next Wednesday April 18 for my next adjustment and I'll definitely take this subject up with them.
Well, that's my long story for now. If you've read this far you're probably considering this procedure for yourself. Feel free to ask questions. I hope this has been helpful to at least one person.
-Tom
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Leg Onset, June 2007
Keep the faith!
