Hi Kevin,

I realize you don't have a definite diagnosis of a paralyzed diaphragm yet and won't until you've had the Sniff test. Thus, the terms we're using are different...elevated lung diaphragm vs paralyzed diaphragm. It will be a relief, I know, to have an actual diagnosis so you can chart the course ahead. In the mean time, you're doing exactly what I've tried to do with every medical issue I've faced, ie learn as much as I can about it. One of the things that has really helped me learn about paralyzed diaphragms, ie possible causes, symptoms, treatment options, breathing exercises, physical therapy, recovery time, waiting to let the phrenic heal itself and how long that takes, etc. is joining the facebook group for people with paralyzed diaphragms. It is a rare condition; and being able to read posts from 750+ people who have it and their experiences and tap into their expertise has really helped me learn about and figure out how I'm going to deal with my paralyzed diaphragm. I've never thought facebook had much value; but I've changed my mind about that and hope you might consider joining the group. I have the mindset you do, which is to do everything I can through diet, physical therapy, qijong, TCM, breathing exercises, etc, carefully weigh my options and resort to surgery as a last option. My thoracic surgeon wanted to schedule me for plication surgery right away and pretty much scoffed at the idea of physical therapy, qijong, breathing exercises, etc....which is the path I decided to take. He did recommend losing weight, which I'm working on. I've gotten the impression that being physically fit has really impacted how people respond to plication surgery, so that will really work in your favor if you decide to have it at some point.

I wonder what year the YouTube film you saw that said that plication surgery was a dangerous procedure with a 50% mortality rate was produced and what procedures they were using. Most surgeons now are using VAT (video assisted technology) with robots and doing minimally invasive thoracic surgery. People undergoing plication surgery have vastly different experiences, ranging from getting out of the hospital in a couple of days with minimal pain to being in the hospital for several days and experiencing pain weeks and months later. Some have found it's taken up to a year to recuperate. My surgeon made it sound like plication surgery is a pretty easy routine operation that I would bounce back from with no problem. However, from reading the posts on facebook I know that isn't the case and now have much more realistic expectations about what I might expect if I decide to have plication surgery. I haven't seen or read anything about people dieing as a result of plication surgery, although every operation has its risk. I also haven't read about organs moving up through a hole in the diaphragm. That sounds like a diaphragmatic hernia, which is different from a paralyzed diaphragm, and may be more difficult to repair. I don't know anything about that. However, with a paralyzed diaphragm, breathing is impacted when organs move up into the chest cavity when the paralyzed diaphragm floats upwards and doesn't fulfill its role of keeping organs in place. My left diaphragm is paralyzed. As a result, my stomach is floating up into my left lung cavity. It seems as though the liver floats up into the chest cavity of people with paralyzed right diaphragms. The surgeon does insure all the organs are in their proper places as part of plication surgery.

Re diaphragm pacing -- If you join the facebook group, please read all of the posts from Steven Carter. I first heard about diaphragm pacing from him, and he has had such a positive result from this procedure. He posted pictures of the pacemaker and wires that go inside his body that attach to his diaphragm, which were pretty interesting. He said there is only one person in the country doing this procedure on adults with paralyzed diaphragms, Dr. Onders at University Hospital in Cleveland, although the procedure is apparently being used for children and adults with ALS, spinal injuries, etc. to get people off ventilators. I asked Steven yesterday what the prerequisites are for Dr. Onders to accept you as a patient for diaphragm pacing, and he said the diaphragm had to respond to electrical stimulation. Here is a link explaining what it is in general terms: https://en.wikipedia.org/wiki/Diaphragm_pacing. I think Steven said you would know within 3 months if this procedure was going to work, and it had a success rate of 89%.

If you're interested in this as a future option, I encourage you to contact Dr. Onders office directly. If I were younger (I'll be 75 this month) I'd definitely look at this option first if/when I needed surgery. I'd also look at grafting a functioning nerve onto the non functioning phrenic nerve, which Dr. Kaufman in New York is doing. https://www.advancedreconstruction.com/matthew-kaufman-md/ . I think he operates at UCLA too. They seem to be the leading and I think the only experts in the country doing their respective things, whereas a lot of excellent doctors around the country are doing plication surgery.

I got a breathing tool called The Breather from PN Medical that I like and think is helping me. One of their people had a really informative interview with Dr. Mary Massery about the diaphragm. This is a link to an article she wrote that covered some of the valuable information she spoke about: https://www.masserypt.com/wp-content/uploads/2018/05/Massery.-Phrenic-Nerve-PT.-Rehab-Surgery-Chap-11.-2017.pdf

I'll be anxious to hear the results of your tests. Please let me know if I can provide any other information. Nancy

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