1. < Lung Health

Paralyzed Diaphragm

Posted by giller198 @giller198, Jul 3, 2018

My name is John and I was diagnosed this past January with a paralyzed right diaphragm. Phrenic nerve damage has been ruled out because of the amount of time between my heart valve surgery and when this started. I still cannot figure how this happened, I have a couple of ideas but nothing conclusive. I have seen two pulmonary doctors and both say there is a surgical procedure that can be done but no guarantee that it will work. I would like to know if anyone out there has been diagnosed with a paralyzed diaphragm and if they had it fixed.

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bigbdk | @bigbdk | Oct 18, 2020
In reply to @nla4625 "Brian -- I really sorry that you had such a terrible experience with this surgery and..." + (show)
@nla4625

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

Jump to this post

Nancy, very nice to speak with you. My surgery was through my side. Scar runs close to my scapula to just below my armpit. I don’t want to scare people about this surgery but just from my experience it was terrible pain. My chest is still numb around the diaphragm area from the front to my side. There was considerable bleeding for at least 4 days and a chest tube was inserted during surgery through your back. They also inserted a catheter which I was so thankful of because getting up was painful even with pain meds being pumped in near my spine which I forgot what they call. It feels like I have a wad of material that runs under my bottom rib. I have lost a lot of weight in the last 6 months and it does protrude some and is noticeable. They may have better ways of doing this surgery now. I couldn’t find much 4 years ago. Wishing you the best. Brian

REPLY
fracturedd | @fracturedd | Oct 18, 2020
In reply to @bigbdk "Before the surgery I would be out of breath just climbing one flight of stairs. Debilitating..." + (show)
@bigbdk

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

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@bigbdk ugh- that sounds awful. I hope you find some alternate therapy to help with your pain. 🤞🏽

REPLY
nla4625 | @nla4625 | Oct 22, 2020
In reply to @nla4625 "Brian -- I really sorry that you had such a terrible experience with this surgery and..." + (show)
@nla4625

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

Jump to this post

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

REPLY
2 replies
bigbdk | @bigbdk | Oct 22, 2020
In reply to @nla4625 "I met with the thoracic surgeon and his PA separately yesterday regarding plication surgery for a..." + (show)
@nla4625

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

Jump to this post

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

REPLY
2 replies
nla4625 | @nla4625 | Oct 22, 2020
In reply to @bigbdk "Nancy, I bought a Peloton exercise bike and it has done wonders for me. Not only..." + (show)
@bigbdk

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

Jump to this post

Brian -- Wow! You've really inspired me. I sent an email to NuStep this morning to see if they had any used reconditioned machines for sale. With the third wave of Covid 19 hitting everywhere and being in several high risk groups, I won't be going out much this winter and know I need to have something at home for exercise. I liked using one of their machines when I was recovering from my last serious health incident and hope they will have one in my price range. I don't know quite how to describe it; but you sit in a comfortable seat with a backrest, use elliptical type foot pedals, and hold on to the handles that move -- all of which exercises several muscles. It's really easy and comfortable and has a lot of different settings to increase the intensity. My balance isn't the best, because of being deaf in one ear I think, so I don't want to get a bike like the one you are using. Anyway, thanks for inspiring me. I'm really glad you're doing so well! Nancy

REPLY
migizii | @migizii | Oct 24, 2020
In reply to @bigbdk "Nancy, I bought a Peloton exercise bike and it has done wonders for me. Not only..." + (show)
@bigbdk

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

Jump to this post

@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😜

REPLY
1 reply
nla4625 | @nla4625 | Oct 24, 2020
In reply to @migizii "@migizii. I also purchased a recumbent stationary bike (Sole R92) and am slowly building up my..." + (show)
@migizii

@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😜

Jump to this post

Thanks for your comment and input! There are so many options out there. I looked at the NuStep machines, which I used for rehab before and really liked; but even reconditioned ones are $3500 plus several hundred extra dollars for shipping and warranty. They are out of my price range. I boycott Amazon but read about Teeter machines on Amazon. Many of the reviews commented how similar the machines were to NuStep. I went to the Teeter website and bought the next model up from the one on Amazon. It was on sale, shipping and a decent warranty were included, and I found another internet promo code for $100 off. Most of the reviews were positive about how sturdy, reliable, etc. it was, so I took the plunge and ordered one. I'm not sure when I'll get it, but I know using it will really help me build up my strength and I will use it. You've inspired me too, Take care...particularly walking outside in ice and snow. I'm not mentally prepared for winter yet but know it's coming. Ugh. Nancy

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Nov 1, 2020
In reply to @nla4625 "I met with the thoracic surgeon and his PA separately yesterday regarding plication surgery for a..." + (show)
@nla4625

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

Jump to this post

@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/

REPLY
1 reply
nla4625 | @nla4625 | Nov 1, 2020
In reply to @jenniferhunter "@nla4625 Hi Nancy, I ran across your post and wanted to pass some information along since..." + (show)
@jenniferhunter

@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/

Jump to this post

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

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Nov 1, 2020
In reply to @nla4625 "Thanks a lot for this information, Jennifer. You and others on this site are such good..." + (show)
@nla4625

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

Jump to this post

@nla4625 You're welcome, Nancy. I think this doctor is the only one in the country at this time doing the phrenic nerve graft surgery, so you would have to direct your questions there to consider if this is some thing that is right for you. There is a lot to consider for any surgery, and I share your faith and admiration for Mayo. I have had 2 surgeries there, a spine procedure, and recently surgery for a broken ankle. I like to share related information even when it isn't within my personal experience because it isn't always easy to find a path to wellness.

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