I wanted to write about this sooner but since this is all very new to me I had to wait some time to see how the pacer really works and become comfortable with it…
A diaphragmatic pacing system is a device which electrically stimulates your diaphragm muscles and nerves to make your diaphragm contract so that air is pulled into your lungs. For people with spinal cord injuries it is very common to be dependent on a mechanical ventilator (at least in the beginning). Depending on the level of injury, most patients are able to wean the vent but usually if the injury is at C3 level or above, the patient is ventilator dependent their whole life… I am included in this since I have a C1 / C2 injury. A diaphragm pacer makes it possible for you to breathe without the vent.
I remember that three months after my accident I had gotten a pacer implanted but because of the doctor’s mistake I got a terrible infection and had to get the pacer off. I was then told that because of all the damage to my body I would not be able to get another pacer. Well two years past and I fought to get my lungs to work. But after all that time of doing breathing exercises I was only able to stay disconnected from the vent for ten minutes. So that is when I decided to get a second opinion on getting another pacer. At the time, all doctors told me that it was very likely that my diaphragm would not respond since it had been two years using the vent. But, I had to try it out- it was my only option.
Early this year, I contacted a doctor in New Jersey who was able to do the surgery for a pacer. He explained that there are two types – diaphragm stimulator and phrenic nerve stimulator. My first was the diaphragm stimulator. This system includes four electrodes implanted in the diaphragm to provide muscle stimulation, a fifth electrode implanted under the skin which grounds the system and completes the circuit, an electrode connector which groups the five electrodes exiting the skin into a socket, an external pulse generator and removal cable to connect the electrode socket. This system is connected directly to the diaphragm but I did not like it because the wounds stay open. Because this is not wireless, the two cables come out of you body so it is not the best to deal with. This time, the doctor suggested I get a phrenic nerve stimulator because of the damage the first surgery might have caused. This system places an electrode behind the phrenic nerve, either in the neck or in the chest. The electrode is implanted just under the skin and is connected to an external transmitter and antennas to send radiofrequency energy to the implanted receivers. The receivers then convert the radio waves into stimulation pulses and these pulses are then sent down the electrodes to the phrenic nerves, causing the diaphragm to contract. This contraction causes the patient to breathe. In my opinion, this type is better since its wireless but your phrenic nerves have to be strong enough to send the signal.
When I went in for the surgery I had already decided on the phrenic nerve pacer. I arrived to the hospital the night before the surgery and the next morning started the procedure. The doctor explained his plan and then tested my phrenic nerves. He told me that the phrenic nerves are at C4/5 level and since my injury is C1/2, there is a chance they might not work. I was very fortunate that mine did work – and much stronger than the doctor expected. The surgery took about three hours and then I had to stay in the hospital for a few more days. It took about two weeks for everything to heal and then I was able to turn on the pacer.
Instead of going to a rehab, I just went home but had to do everything on my own. The first day we had a video call with the pacer representative to set everything up. That day I was able to do 15 minutes without the vent and then quickly increased the time. In only two weeks I was off the vent completely!!!
It has now been about three months using this pacer and have figured out some important and helpful things. Most important (and no one mentioned it) is to not keep a phone within two feet of the pacer – it will interfere with the signal. Also, I noticed that the positioning of my body affects the strength of the signal. If I lean forward or lay on my side, the pacer doesn’t work as well. After doing some research, I learned that if I change to a fenestrated trachea, it helps with the air circulation. After doing this, I saw a big difference with my breathing. In addition to this, I noticed that there is a difference when you cap the trachea and when you use a speaking valve. The speaking valve is easier because it allows air to enter through your throat, while with the cap all the air goes in through your nose and mouth. My goal is to use the cap 24/7 since it’s the normal way of breathing but currently I only use it when I am awake.
To not be dependent on the vent is a huge accomplishment but I still have a long way to go. My hope is that I can use this pacer as physical therapy for my diaphragm and maybe in the future it will be strong enough to work on its own.