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tmasters

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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
 

st123

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Thank you for sharing your story, Tom. I'm so glad you're doing well!
 

TedH5

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Please keep us updated. Good luck my friend. I hope and pray that it helps!
 

Ms. Pie

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Yes, I want to discuss with my neurologist on this coming Monday this very subject. Thank you for your detailed description of the procedure and everything you felt, thought. Much obliged! Looking forward to seeing more of your experiences with the DPS! :)
 

glupavomomiche

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Wow Tom! Thanks for sharing! Great writing! :D

And thanks for firming up my resolve to not get a DPS ;) LOL!

~ Sarah
 

Steve Dukes

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Tom, I had pacer "installed" last June, 29. Mine was done in cleveland by Dr. Onders. Very similar experience, except I got peg at same time. It took about one month, but then I could really tell diference. My Clinic Has had five patients with diaphgram pacer surgery with different degrees of sucess. My breathing is still better 10 months later than before the surgery. Other progression has continued of course. Dr. Onders gave no restrictions on getting connection wet. My wife just cleans it with alcohol wipe before covering with folded 4x4, after shower. We change connector pad weekly and have not had infection or granulation problems. I sleep every night with mine and if I nap in the day time, I use it. Anyone also feel free to ask more specific questions. Early indications are that it doesn't help everyone, but what else is new with the different way ALS affects each of us differently.
Steve
 

Al

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thanks Tom good to hear from someone who's been through it. Glad you're doing so well and hope you continue to do as well.

Al
 

Zaphoon

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Thanks for sharing the adventure, Tom.
 

Toto's Dorothy

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Oh Tom, you had me at the first shock! Thanks for sharing your story.
 

VoiceforLinda

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Thank you Tom for sharing your experience. My neurologist discussed this with me at my last visit saying I was a good candidate and that they will start procedures hopefully this summer. I go back to the clinic on the 23rd and I am planning on asking that I be scheduled for it as soon as it is possible. Honestly it scares me very much but reading a first hand experience definately helps. I just hope I qualify and pass all the extensive testing. I wish you well and continued success with your DPS. Keep us updated please.
Linda
 

beckysuenc

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Thanks for sharing Tom. I've been interested in the details. Keep us updated.
 

cervus

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I've always wondered about the DPS and how it works. Thanks for sharing your story. You write very well!
 

susanf

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My clinic in Tampa has one pals with it with great results. Thanks Tom for sharing.
 

John1

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Thanks Tom for the well-written and detailed description of your implant. I hope you have excellent results with it and look forward to an update after you have lived with it for a while.

Thanks also to Steve for sharing his and others' experiences with it. They mostly sound encouraging for PALS if they qualify.
 

tmasters

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Thanks for the support everyone!

I wrestled with how many details to provide here. I was torn between telling the "whole truth" and yet not wanting to scare anyone off. When I researched this for my own self, I wanted to know both the good and the bad. I hope I haven't scared anyone away but we all have to make our own decisions based on all the data. Mine is just one data point. I don't recall the upper FVC level, but I hope they start doing this for PALS when breathing is less compromised.

Regarding breathing difficulty post-op: since my FVC was near or at the bottom of the "acceptable" level for this procedure, breathing was most likely more traumatic than the typical case. I was measured at 49% one month before the surgery and was averaging 4% per month decline, so I must have been close to the 45% cutoff point.

Update: Today is the fourth day after surgery. I am feeling MUCH better than yesterday. The pain is ALL gone now and I feel like I am mostly recovered. Still have some muscle soreness but it's better too. I paced for 12 hours yesterday and I usually just forget that it's on. It feels a lot like fasciculations, which most of us PALS have learned to tune out. I am looking forward to the device providing a benefit.

Steve Dukes: I appreciate your comments very much. If anyone else has had experiences with this I'd love to hear it. I heard also from another DPS patient who takes the bandages off during the shower too. I think my instructions were overly conservative.

Forgot to mention: whenever you go to hospital bring your own BIPAP and your own cough assist with you. For BIPAP they didn't have a nasal pillow mask, which is what I'm used to. I had my BIPAP but had to sign a release of liability to use it. They also claimed not to have a cough assist, and I had wished I had brought mine.

I'll try to update periodically if there is anything to say, at least until this thread get closed.

-Tom
 
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