Paralyzed Diaphragm

I question whether a doctor should recommend plication surgery, as opposed to a consultation with a plication surgeon. In my case, notwithstanding the debilitation I felt, the surgeon’s assessment was that I might benefit as much from “physio, a personal trainer, some form of exercise, it doesn’t really matter.” I was a bit put out at the lack of direction but, fortunately, I held out a false hope that my phrenic nerve might recover, and plication would have “sewn” my diaphragm down, permanently. So I undertook to research my options. In the meantime, daily activities that frustrated me helped strengthen muscle groups that “cope” with breathlessness. Gardening, for example. I gradually became less distressed.

I suggest you try living with it for a year. FYI, I’ve since enrolled in cardio rehabilitation (resistance/aerobic training), pulmonary rehabilitation (yoga-ish) and “Singing to Breathe” two years after my paralysis - primarily to re-engage socially. Good luck!

Thanks a million for your response. I'm not very good with my ipad and my original post got away from me before I finished it. The doctor I'm dealing with is a thoracic surgeon who has done plication therapies. I just scheduled a second appointment with him for next week and will discuss the options you suggested with him. I'd much prefer trying qigong and respiratory therapy first. I'm really glad I found this group. Thanks again. Nancy

@nla4625 @randolph I wanted to let you know that there is a surgeon who does nerve transfers to replace the phrenic nerve to the diaphragm. I don't have experience with this condition. Another member had shared a doctor's name who does graft surgery to repair a phrenic nerve. Here is the website where you can find the information. https://www.advancedreconstruction.com/ That may give you another option to consider.

Thanks very much for this information. I read something too about an implant to stimulate the diaphragm that sounded like a heart pacemaker. My Sniff test seemed to indicate the phenal? nerve wasn't working at all, so I don't think those things would be an option for me. In addition to a followup with my thoracic surgeon to get his thoughts on ways other than surgery to deal with this and ask him to prescribe respiration therapy, I made an appointment to see an acupuncturist who practices Chinese medicine and teaches tai chi. I assume knows about gigong. I've gotten several good tips from these posts on resources for breathing exercises. Thanks again. Nancy

@nla4625 You are welcome, Nancy. My response to you was for a surgeon who is moving a nerve inside the body so it will replace the phrenic nerve, a phrenic nerve reconstruction. It might be worth it to check it out, and only a surgeon who does that procedure could answer if it would be an option for you and how the body learns to use the new nerve. The website also has pages about a pacemaker for the diaphragm and for replacing the diaphragm muscle. There are several links to studies so you can read about it. I hope you find a solution that helps and wish you the best.

Thanks for clarifying this. I think information is power so am grateful for the feedback and information on this site. Maybe it's a function of my advanced age -- 74 -- and having had to deal with numerous health problems over the years, but I'm not leaning toward having any surgery unless it is absolutely necessary. I'm confused about the results of a breathing test I took which seemed to indicate my lungs are functioning within normal parameters. I may have misunderstood it but will get that clarified when I meet with the thoracic specialist next week and we discuss all my options, particularly non surgical ones. I have a feeling my paralyzed diaphragm is causing larger issues than my breathing problems, ie my stomach is way out of position, etc. I'll know more next week. Thanks again. Nancy

Being one who has went through this surgery, I recommend exhausting all options before having this surgery. I am in pain all the time from this surgery. There wasn’t anyone I could find online that had had this surgery so I went in not knowing what to expect. I know hard exercise has really helped me expand my breathing but that may not be an option for you. I wish I had tried other options. The surgery itself is very very painful without strong opioid pain relievers which are very addictive and you will go through withdrawals when coming off them. Just my opinion and I wish you the best. Brian

@bigbdk May I ask what symptoms you had before your surgery?

Brian -- I really sorry that you had such a terrible experience with this surgery and are in constant pain. I can't even imagine. Your posts have really helped me to trust my instincts that I don't want this surgery now or at all unless my floating diaphragm is causing something life-threatening. Thank you! When I first talked to the thoracic surgeon, he said there were 2 ways they could do the surgery -- through my stomach, which would lead to a two day recovery period in the hospital, or through my side, which would lead to a five-day recovery period in the hospital. The latter was a total red flag that this wasn't a walk in the park. I had brain surgery and treatment for bleeding ulcers at Mayo that resulted in two separate hospital stays of five days each and was a pretty miserable sick puppy. At my age, I don't just bounce back. I had debilitating headaches for two years, chronic fatigue, and two bouts of depression where I learned to pace myself and be happy for what I could do. That will bode well for me in this situation, even though I will make every effort to improve my breathing. Being a reformed type A personality, I learned the concept of enough and whatever I could do was enough...particularly in dealing with blinding headaches. From doing my own research on headaches, I found they were being caused by aspartame...a packet of equal in my coffee in the morning and a diet coke in the afternoon. When I eliminated them from my diet, the headaches stopped. What a blessing not to be in constant pain. I wish the same blessing for you. Are you near a clinic that has a program to help people deal with chronic pain? If you haven't tried that route, I hope you will. Was your surgery through your side or stomach? Take care... I'll let you know what the doctor says next week. Thanks again. Nancy

Before the surgery I would be out of breath just climbing one flight of stairs. Debilitating headaches was another issue I dealt with. Now from the surgery which was 4 years ago I have constant pain. Some days are worse than others. I still live my life the best I can. I guess you get used to it or become numb to it after so much time. My injury was trauma to the right side of my chest which could be causing the pain to be worse. I just wish I would have exhausted all other options before the surgery. I don’t know whether the surgery increased my breathing or not. It seemed to be the same for me. Brian