@auvil21. Hi Janet -- This is amazing that you and so many of your relatives have or have had paralyzed diaphragms. I was diagnosed with a paralyzed left diaphragm last October and read that it was rare. You could be famous and be a great case study, if you were so inclined. My thoracic surgeon scoffed at the thought of physical therapy and breathing exercises, and I'm wondering if it is helping you. He wanted to do plication surgery right away, but I said I wanted to wait at least until spring. My life has slowed down considerably from Covid, and I just pace myself. Thus, I'm getting along pretty well and may not have surgery until I get worse. Someone on MayoConnect told me about a surgeon in New Jersey who is grafting a nerve onto that nerve that controls the diaphragm that isn't working properly. He/she said at the time he was the only person in the country doing this. I tracked him down by doing a google search. I'm 74 and don't have the inclination to do this; but if I were 20 years younger, I'd look into it. Patient feedback on his web site was quite positive. A couple of people on MayoConnect had awful experiences with plication surgery, but I don't know how long ago they had the operations or how they were done. My surgeon specializes in minimally invasive chest surgery using robots. I saw how he would do it on the internet, and it's pretty amazing. He said things would go more smoothly if I lost weight, so I'm working on that. I'm sorry that you have this, but it's nice to connect with other people who have this! Did your pulmonologist refer you to a thoracic surgeon? Nancy

@auvil2020 Welcome to Mayo Clinic Connect, a place to give and get support. You and your family have been through a lot. At face value it certainly appears to be an inherited family trait.

I moved your question to a lively discussion on this topic. Where members like @jenniferhunter @migizii @bigbdk @fracturedd @randolph @giller198 @alamogal635 @thankful have discussed this topic in the past.

I'm wondering if you have considered going to a specialty or teaching hospital for a second opinion?

@auvil2020 You may want to look at myofascial release. I don't have a paralyzed diaphragm, but I do have a restriction in my chest from thoracic outlet syndrome that affects my breathing because I can't fully expand my chest wall on one side. The nerves that control breathing exit the spinal cord at about the C3 level and travel down the neck and through the chest and can be compressed buy spine issues and muscle spasms. If you have fascial restrictions along that pathway it can affect nerve impulse transmission. The fascial system is like a net webbing that holds us together, but it is easily affected by injuries and bad habits that glue our bodies into less than optimal positions and sometime we just get stuck that way. When my chest is tight, it also affects my heart rate, and after my physical therapist works on me, it can drop my resting heart rate 10 to 15 beats per minute. I also have asthma which accounts for some of the increase in heart rate, but when the tight tissue is released, it has an immediate effect. It would be something you could try to see if it helps, but see an expert level John Barne's trained therapist because it takes a lot of experience to get this right. If that doesn't help and your physical therapy doesn't help, there is a surgeon who does nerve grafting to replace the phrenic nerve, not at Mayo. I saved that information from another patient who had posted this. Here is the link. https://www.advancedreconstruction.com/phrenic-nerve-program/nerve-decompression-grafting/

Here is our myofascial release discussion. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/