Wednesday, October 7, 2009

Diaphragm pacer = more adventure

When I was in my car accident, I broke my neck at the second cervical vertebrae, so the break was very close to the top of my spinal column. This meant that I lost control of all of the muscles from my neck down, including the diaphragm muscle in the abdomen that is used to breathe. So after my accident I was put on a ventilator -- a machine that is hooked up to a person's tracheostomy tube (trach) and pumps a breath of air into the person's lungs a certain number of times a minute. (Approximately 12 to 16.)

I was on a ventilator for the first three years after my accident, and I actually never thought I would ever get off of the ventilator. After my accident I heard about Christopher Reeve getting a diaphragm pacer and I knew that I'd like to have one, although I didn't think it would ever be a real possibility for me since they seemed so few and far between. However, I decided to ask my doctor about it anyway to see what she knew about them. She didn't know much, but she did track down and call the doctor who performs the surgery to implant the diaphragm pacer electrodes on the diaphragm.

(A little background history on the diaphragm pacer: Although the technology of diaphragm pacing has been around since the 1970s, Dr. Ray Onders didn't start doing these surgeries until 2000. He developed a method of laparoscopically implanting the electrodes used for pacing on the diaphragm itself instead placing them on the frenic nerve as had previously been done.)

When I first inquired about the diaphragm pacer, Dr. Onders was the only doctor in the world who performed the surgery. He practices medicine in Cleveland, Ohio, so after finding out that he was so far away from me (in St. Louis), I pretty much gave up any hope of ever having this procedure since I really wasn't in any position to travel hundreds of miles.

Mom got a phone call from Dr. Onders a few days after my docter called him to find out some information about the pacer. Mom and Dr. Onders talked for about an hour, discussing what the diaphragm pacer was, how it worked and if I might be a candidate for one. Everything sounded so promising, so we didn't have to think too long before deciding that we were going to do it. It was daunting since we'd never attempted taking a road trip since my accident (and Cleveland was 10 hours away), but getting a diaphragm pacer was too good of an opportunity to pass up, so we started formulating a plan of how to make things work. Two months later we set off on our way to Cleveland.

I had the surgery to implant the electrodes on my diaphragm on November 17, 2006; the third anniversary of my accident. (I thought it was really cool that I was able to have the surgery done on the anniversary of my accident; what a wonderful way to celebrate!) My family and I were taught about the pacer and how I had to slowly condition my diaphragm muscle to be able to withstand pacing for long periods of time. (The diaphragm is a muscle, so it needed to be strengthened and gotten back into shape since I hadn't used it in three years.) The training process is kind of difficult to explain, so to make this long story shorter, I'll just say that everything was extremely successful, and I went from being completely dependent on the ventilator to being on the diaphragm pacer 100% of the time. It only took eight days to completely transition over to the diaphragm pacer which was a record for the female patients at the time. (Although, I'm not sure if it still is not.)

People often ask if I have to go back on a ventilator at night, and the answer is 'no.' I'm on the pacer 100% of the time and have been since getting the pacer in 2006. (Except for one time when I was hospitalized due to complications that I experienced after having surgery to remove kidney stones.)

Now to the part about becoming more adventurous... I wasn't very motivated to leave the house after my accident. I was happy and content and I liked being at home. I didn't like going out in public unless it was absolutely necessary because I felt awkward out in public. I would go to church every week, to my doctors appointments, occasionally to the store or things like that, but I preferred to stay at home because it was my favorite place to be.

After my accident I vowed that I would never go to Wal-Mart or the mall again. To me, that would have been the epitome of torture. I would hate having all of those eyes on me, feeling in the way, having to try to maneuver around tight, overcrowded aisles, all in addition to the thought of running into someone I knew before my accident. But over time I slowly started to venture out and try new things. I was especially nervous the first few times I actually ate in restaurants, rolled through the mall and things like that, but things got better the more I went out. I'm sure that I would've gotten to this more adventurous point eventually, but getting off the ventilator was definitely the catalyst as it made me feel more confident. (I felt more normal looking since there were no longer tubes attaching me a ventilator.)

I mentioned earlier that Christopher Reeve also had a diaphragm pacer. He was the third patient that Dr. Onders did this procedure on, and I was the 42nd. At the time I got this procedure done, Dr. Onders was the only surgeon in the world to perform this surgery. After the diaphragm pacer became FDA approved more and more surgeons started doing this procedure and now there are dozens of surgeons that perform this procedure in more than a dozen facilities all across the United States and Canada. I'm so happy that word of the diaphragm pacer is spreading so that more people like me can have a better quality of life.


Anonymous said...

I seldom leave comments on blog, but I have been to this post which was recommended by my friend, lots of valuable details, thanks again.

Katie said...

I am so happy I stumbled upon your blog. I'm sure I will read through all of your other posts! My cousin was in a car accident 3 1/2 months ago which paralyzed him from the neck down. TODAY he is in Cleveland and they are going to do the test and HOPEFULLY the surgery to install the diaphragmatic pacer at noon!

Anonymous said...

Ce post m'a beaucoup aide dans mon positionnement. Merci pour ces informations

Lauren H. said...


Anonymous said...
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Anonymous said...

Indeed, really interesting. I had no idea this kind of device existed, and you were one of the first to get one, at number 42. Awesome! You are so damn inspiring, girl!

Matthew Smith said...

I read somewhere that people who use ventilators lose much of their sense of smell and taste, and that diaphragm pacers restores much of it (presumably because they return to breathing through their nose, rather than through a tube in their neck). Did you find this to be the case?

Anonymous said...

I don't normally leave comments on blogs, but after read this I just had to. I am 34 yrs old and on a ventilator, now for 14 yrs, 15 in February 2014. My diaphragm is paralyzed and they don't know why. I world love to learn more about the pacer. Do you know of any websites or doctors I could contact for more info. Thank you for you time. Congratulation!

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