Paralyzed Diaphragm

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

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

I met with the thoracic surgeon and his PA separately yesterday regarding plication surgery for a paralyzed left diaphragm. The surgeon said a paralyzed diaphragm wasn't life threatening, people can live with it, and the decision to have surgery was symptom-driven. I gained a clearer understanding of how my floating paralyzed left diaphragm was actually hampering my breathing, which I hadn't understood before. That being said, I want to see if breathing exercises and losing weight will help before undergoing surgery. I moved from SE MN, where I received outstanding medical care at Mayo for 20 years, to western PA to be nearer family. Finding excellent medical care and whole support systems when you move to a new place is difficult, to say the least; but I think this surgeon really knows what he's doing. He's head of thoracic surgery at one of the two major medical centers in Pittsburgh and specializes in minimally invasive lung surgery using robots. If the breathing exercises and losing weight don't help, I'll probably go ahead with surgery in the spring. He makes his decision on how to do the surgery, ie through the stomach or side, in the operating room based on how clearly he can see inside my chest cavity to operate the robots doing the sewing for the plications across my diaphragm. Does anyone have any information if breathing exercises overcome the negative impacts a floating diaphragm has on breathing? Thanks! This is really a tremendous resource. Nancy

Nancy, I bought a Peloton exercise bike and it has done wonders for me. Not only increasing my lung capacity but weight loss as well. Even with a paralyzed diaphragm I am in the top 3 to 4 percent of all riders now in 6 months and I still continue breaking my own records at 56. You may not want to spend that type of money, but it has been worth every penny. Not only is it safe, it is easy on your joints and low impact. If you still have mobility and can get on an exercise bike I highly recommend one. There are cheaper versions out there too. It took me a couple months of hard work and I really noticed a difference. I am off all prescribed medications now after 6 months. I pushed myself very hard to get to this point. At your age you may not be able to achieve what I did in such a short period of time, but I do know exercising and weight loss improved my health tremendously. Please consult your doctor before trying what I did, but I am a new man now. Good luck!
Brian

Nancy, I bought a Peloton exercise bike and it has done wonders for me. Not only increasing my lung capacity but weight loss as well. Even with a paralyzed diaphragm I am in the top 3 to 4 percent of all riders now in 6 months and I still continue breaking my own records at 56. You may not want to spend that type of money, but it has been worth every penny. Not only is it safe, it is easy on your joints and low impact. If you still have mobility and can get on an exercise bike I highly recommend one. There are cheaper versions out there too. It took me a couple months of hard work and I really noticed a difference. I am off all prescribed medications now after 6 months. I pushed myself very hard to get to this point. At your age you may not be able to achieve what I did in such a short period of time, but I do know exercising and weight loss improved my health tremendously. Please consult your doctor before trying what I did, but I am a new man now. Good luck!
Brian

@migizii. I also purchased a recumbent stationary bike (Sole R92) and am slowly building up my time. I started at 15 minutes given my lung issues and fusion surgery therapy on my foot. It feels good to be able to add this walking in circles around my house now that the snow and cold has covered our streets (and I don’t yet have ice cleats/boots) for those conditions in my “new” shoe size😜

I met with the thoracic surgeon and his PA separately yesterday regarding plication surgery for a paralyzed left diaphragm. The surgeon said a paralyzed diaphragm wasn't life threatening, people can live with it, and the decision to have surgery was symptom-driven. I gained a clearer understanding of how my floating paralyzed left diaphragm was actually hampering my breathing, which I hadn't understood before. That being said, I want to see if breathing exercises and losing weight will help before undergoing surgery. I moved from SE MN, where I received outstanding medical care at Mayo for 20 years, to western PA to be nearer family. Finding excellent medical care and whole support systems when you move to a new place is difficult, to say the least; but I think this surgeon really knows what he's doing. He's head of thoracic surgery at one of the two major medical centers in Pittsburgh and specializes in minimally invasive lung surgery using robots. If the breathing exercises and losing weight don't help, I'll probably go ahead with surgery in the spring. He makes his decision on how to do the surgery, ie through the stomach or side, in the operating room based on how clearly he can see inside my chest cavity to operate the robots doing the sewing for the plications across my diaphragm. Does anyone have any information if breathing exercises overcome the negative impacts a floating diaphragm has on breathing? Thanks! This is really a tremendous resource. Nancy

@nla4625 Hi Nancy, I ran across your post and wanted to pass some information along since you discussed a paralyzed diaphragm. Another member had shared a doctor's name in New Jersey who does graft surgery to repair a phrenic nerve. Here is the website where you can find the information. https://www.advancedreconstruction.com/

Thanks a lot for this information, Jennifer. You and others on this site are such good resources. I think if I were 20-30 years younger I would definitely look into this; but at 74 and not being in the best shape I don't have the energy or inclination to pursue it. I don't know how much more involved the nerve grafting surgery would be than the plication surgery I'm planning on having in the spring, but I would guess it's much more complicated and impact more of my body. Additionally, I would have to get to and from New Jersey, instead of driving a hour from my house to get to the hospital. If I didn't have faith in the surgeon and hospital here, I'd fly home to Rochester, MN to have it done at Mayo....but I think I'm in good hands. After my move to western PA, I made sure my medicare supplement would cover me if I felt the need to get back to Mayo to deal with a serious medical problem. The nerve graft is a wonderful option, though...and I know others will really benefit from it in the future. Thanks for letting me know about it. Nancy