Paralyzed Diaphragm

I was diagnosed with right side paralyzed diaphragm almost 1 yr ago- No injury, no surgery- begin with shortness of breath - had chest xray and confirmed right side diaphragm paralysis- Sent to pulmonologist who ran the sniff test, more tests & confirmed the diagnosis ...and told me to call if I got worse...-with no return appointment-
My PCP sent me to physical therapy which seems to be helping- at least teaching me how to breathe correctly and doing diaphragm massage , some yoga stretching
My father many years ago was diagnosed with same issue..was told that both right and left was paralyzed- they tied his diaphragm down and put him on a ventilator - sent him home with a diagnosis of final stages of Lou Gehrig's disease. He lived 18yrs with us taking care of him at home.
My Sister was diagnosed with right side paralysis- that was about 5 yrs ago stating it was probably from a fall-
My PCP and Physical Therapist believe this is possibly hereditary but no cases have been recorded

Anyone have any new info on this issue or any input to contribute....Janet

@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/

Thanks for your response
I definitely would consider

Thanks

Physical therapy has been good for me
I definitely am learning to breathe better and strengthening my upper muscles
Stay well

@auvil2020. Thanks for letting me know this. My thoracic surgeon seemed to mock the idea of physical therapy helping with breathing...but I think it will help me. I can't seem to get it together to do all of the things I know I need to be doing, so I'm taking things in steps. I concentrated on losing weight first and have lost 30 pounds so far. I'll continue with that and am now moving to the next step, which is to move more. A couple of wonderful people on MayoConnect convinced me moving even in short intervals will really help over time. It really helps that spring is coming and I can get outside without fear of falling on the ice. I will add breathing exercises that I got on the internet to that. The worst part of this is having no stamina, so I know anything I can do to build up my stamina will help. I'm so looking forward to getting out and about this summer when Covid is less of a threat (hopefully) and want to be as strong as possible to visit the zoo, botanical garden, etc. and have the surgery if that's in the cards. Good luck! Nancy

Nancy, my name is John and I also have a right paralyzed diaphragm. It's been about three years now. Like you I have done a ton of research on it and I am also 74. I kind of got the impression from my pulmonologists that he didn't know what to do because he never really explained things or had a course of action. He had me do three pulmonary function test over a about a year and a half and I passed them all. I have been a senior swimmer before this diaphragm problem and I have continued to swim. At first it was tough, could hardly do twenty five yards without stopping to rest and catch my breath. I am now up to doing two hundred yard swims without stopping with a short rest then starting again. I personally think that the swimming and taking in big gulps of air and exhaling has helped with expanding that lung. As far as walking or riding my bike I never had a problem with breathing only with swimming. Do you have a spirometer? I bought one when this first started and I use it every now and then to check my lung volume. You can usually get them at any drug store. You take care, we'll keep in touch

@john. Thanks for your nice note. This whole thing about lung function is puzzling to me because I took some sort of breathing test and my lungs are working within normal capacity. I finally deduced that my floating left diaphragm is letting my other organs float up into my chest capacity, thereby reducing my lung capacity and leading to chest pain and shortness of breath. The thoracic surgeon I'm seeing has done plication surgery and specializes in minimally invasive surgery using robots. He's chief of thoracic surgery at a major university affiliated hospital, and I have confidence he knows what he's doing. It's taken a while, but I had my xrays and test results relating to my paralyzed diaphragm sent to Mayo and they have been scanned into their system. They have to mail them, surprising in this day of the internet. I'll be seeking a second opinion via video conference to ease my mind that this plication surgery is the best course. The main thing that would convince me to have the surgery is to prevent serious issues down the road. The surgeon spent quite a bit of time asking me about my stomach, which he said is located in a really odd position. So far I haven't had any digestive issues. I asked him if he had done a test to see if the phrenal? nerve was working, and he said the sniff test showed it wasn't. Anyway, February is my least favorite month, and I always seem to drag through it. It's almost over, the snow has pretty much melted, and it's wonderful that it is still light by 6 pm. I started my small step incremental exercise and breathing regime and do have one of those things you breath into. I'll add it to the regimen...good thought. I've never been a swimmer, but I admire how much you can do with your paralyzed diaphragm. You've really inspired me. Thanks. Nancy

@nla4625- Morning Nancy. I don't know why doctors don't want to hear about certain things. Probably they can't control or understand it. After my lobectomy, I did lung rehab at my local hospital, and let me tell you it works! You lean great body positions to be the best for easier breathing and exercises to strengthen what your muscles need. Diet and emotional help are available at some places too.

I would encourage you to pursue this path. People with all sorts of problems attend. There were several who needed oxygen and walkers and many overweight people. It was wonderful to see them improve.

Have you researched this?