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/
My husband was also just diagnosed with a R paralyzed diaphragm and has to have O2 constantly. Not much in the way of education or helpful suggestions from his dr, I feel like we are on our own. Any help or suggestions would be greatly appreciated.
The right side of my diaphragm is parylized. Having the phrenic nerve looked at next month at the neurologist. I am contemplating seeing a group at Mayo to access this and guide me with the proper procedure. Do you know HOW the nerve is diagnosed?
My husband was also just diagnosed with a R paralyzed diaphragm and has to have O2 constantly. Not much in the way of education or helpful suggestions from his dr, I feel like we are on our own. Any help or suggestions would be greatly appreciated.
This is my update. My name is John and was diagnosed with a paralyzed right diaphragm in late 2017. Went through all the testing that my local hospital could do. I passed two pulmonary function tests in 2018 and 2019. I was then and still am an active swimmer. A member of US Masters Swimming and Arizona Senior Games. It was tough swimming when I was first diagnosed but I kept at it. I'm back to swimming at least 2000 yards at a swim. Sometimes I get crazy and do 2500. I recently had another pulmonary function test. Went and saw my pulmonologists a few weeks ago and got some great news. My lungs are functioning just as good as anyone my age. My oxygen conversion is at 96%. I have just a small problem with expelling all the air from that right lung. I asked my doctor if staying active and swimming helped with me over come the diaphragm problem. All he could say was whatever I'm doing I should keep doing it and he doesn't want to see me anymore. Can't ask for anything better than that. I can't say staying active will help others with a diaphragm issue but I do believe it helped me a lot.
This is my update. My name is John and was diagnosed with a paralyzed right diaphragm in late 2017. Went through all the testing that my local hospital could do. I passed two pulmonary function tests in 2018 and 2019. I was then and still am an active swimmer. A member of US Masters Swimming and Arizona Senior Games. It was tough swimming when I was first diagnosed but I kept at it. I'm back to swimming at least 2000 yards at a swim. Sometimes I get crazy and do 2500. I recently had another pulmonary function test. Went and saw my pulmonologists a few weeks ago and got some great news. My lungs are functioning just as good as anyone my age. My oxygen conversion is at 96%. I have just a small problem with expelling all the air from that right lung. I asked my doctor if staying active and swimming helped with me over come the diaphragm problem. All he could say was whatever I'm doing I should keep doing it and he doesn't want to see me anymore. Can't ask for anything better than that. I can't say staying active will help others with a diaphragm issue but I do believe it helped me a lot.
This is my update. My name is John and was diagnosed with a paralyzed right diaphragm in late 2017. Went through all the testing that my local hospital could do. I passed two pulmonary function tests in 2018 and 2019. I was then and still am an active swimmer. A member of US Masters Swimming and Arizona Senior Games. It was tough swimming when I was first diagnosed but I kept at it. I'm back to swimming at least 2000 yards at a swim. Sometimes I get crazy and do 2500. I recently had another pulmonary function test. Went and saw my pulmonologists a few weeks ago and got some great news. My lungs are functioning just as good as anyone my age. My oxygen conversion is at 96%. I have just a small problem with expelling all the air from that right lung. I asked my doctor if staying active and swimming helped with me over come the diaphragm problem. All he could say was whatever I'm doing I should keep doing it and he doesn't want to see me anymore. Can't ask for anything better than that. I can't say staying active will help others with a diaphragm issue but I do believe it helped me a lot.
@gillers198 Hi John, I was glad to read your update and am really glad you are doing so well. An update from me follows, namely I'm in the process of totally switching gears. Since I have been coping well with my left paralyzed diaphragm, I had decided to put off plication surgery until my symptoms became really debilitating. Because of my age (75), I had some concerns about whether this was the right decision that might compromise my health prospects in the future. Because my paralyzed diaphragm is floating, my internal organs are moving up into my chest cavity, which I was afraid might lead to serious problems with them in the future. Additionally, I didn't know if there was an age limit after which plication surgery couldn't be performed or if there was a point of no return where the diaphragm became so atrophied plication wasn't possible.
Because I've evidently had this condition for so long, I knew there wasn't any hope of my phrenic nerve healing itself. For people with a recent injury to the phrenic nerve that's resulted in a paralyzed diaphragm, it is recommended they wait for a couple of years to see if the phrenic nerve will heal itself before pursuing other surgical options. I also ruled out diaphragm pacing and the nerve graft for a variety of reasons and don't know if I would have qualified for them anyway.
Yesterday I had a videoconference with Dr. Mark Ginsburg, chair of the Diaphragm Center at Columbia University Medical Center in NY. He probably knows more about this rare condition, i.e. paralyzed diaphragms, and how to treat them than anyone in the world. He said if I waited age wouldn't preclude me from getting plication surgery later and the diaphragm was never too atrophied for plication surgery to be successful. He brought up something I had not even thought about that has prompted me to have plication surgery in the near future. He said that even though my paralyzed diaphragm wasn't adversely impacting my quality of life, it was putting my life at risk. My internal organs moving up into my chest cavity were compressing my left lung to the point it wasn't working, and I was relying totally on my right lung to breath. He said if I got pneumonia, COVID, or some other lung disease I would be in serious trouble, ie might not survive. By having the plication surgery done to flatten my diaphragm and hold it in place, the capacity of my left lung would almost return to normal ... and I would have two functioning lungs.
There have been incredible strides in doing plication surgery. Most experienced thoracic surgeons are using VAT minimally invasive surgery with robots for plication surgery. They make three small incisions in the abdomen, use robots to do the folds and sewing of the diaphragm, and tie it in place. Dr. Ginsberg said the surgery would take 30 minutes. Patients generally go home the next day. Everyone is different; but the recovery time for most people on the facebook paralyzed diaphragm page who have undergone this minimally invasive plication procedure has been a couple of weeks. They took Tylenol to deal with whatever pain and discomfort they had. For some it has been longer and more painful.
Anyway, I'm totally rethinking things and will be pursuing plication surgery in the near future...after I lose more weight. I'm lucky I have some options of where to go...because there aren't a lot of skilled thoracic surgeons doing this type of surgery. If I were still in MN, I'd go to Mayo in a heartbeat. But it's too far for me to get there, particularly with COVID still raging. I'm hoping to have Dr. Ginsberg do the procedure in New York, since I think he is the best and has the most experience doing them. Another option is Cleveland Clinic. Anyway, I'll let you know how things go in a few months. I'm really glad you are doing so well! Everyone says exercise is key when you have a paralyzed diaphragm, which you can certainly attest to. Take care...Nancy
The right side of my diaphragm is parylized. Having the phrenic nerve looked at next month at the neurologist. I am contemplating seeing a group at Mayo to access this and guide me with the proper procedure. Do you know HOW the nerve is diagnosed?
August 2021 I was diagnosed with a elevated right diaphragm, after suffering from extreme shortness of breath for previous months. After much testing, radiological, neuro, and pulmonology my diagnoses was paralysis of right diaphragm. My local neurologist did a nerve conduction study on the right phrenic nerve, the was no response/reaction. Most of the local doctors didn’t have a clue how to treat me. They would tell me things like even though my right lung was collapsed, ly left lung should compensate. I couldn’t even walk across my house without stopping to rest/breath. I began to do my research about possible treatments. My pulmonologist recommended waiting 12 months before seeking surgical treatment, even though I was having to use oxygen and couldn’t really do any activity plus had to use a Trilogy ventilator at night. I did not wait and contacted the Mayo Clinic after researching plication surgery. I went to Jacksonville FL Mayo Clinic, spent a week getting numerous tests completed and then was referred to Dr Ian Mackey, cardio thoracic surgeon at Mayo Clinic Jacksonville. He reviewed all of my tests and once he looked at my pulmonary function studies gave me the option of plication surgery. I had plication of right diaphragm March 4, 2022, this was robotically assisted laparoscopic surgery. I have four 1-2” scars that are now barely visible. I honestly can not say enough about the progress I have made since surgery. I am 6 months post op and my activity has been slowly but steadily progressing. Once I got past the first three weeks of no lifting, then three months of no lifting over 10 pounds, my progress has been amazing. Currently I am able to walk/hike 4-7 miles, I’m back at gym and lifting weights (carefully) and I’m able to run/jog 30min at a time. The quality of my life has improved beyond what I thought I was capable of with only one lung/diaphragm working. I am one blessed 53 year old lady!! I’m open to any questions
This is my update. My name is John and was diagnosed with a paralyzed right diaphragm in late 2017. Went through all the testing that my local hospital could do. I passed two pulmonary function tests in 2018 and 2019. I was then and still am an active swimmer. A member of US Masters Swimming and Arizona Senior Games. It was tough swimming when I was first diagnosed but I kept at it. I'm back to swimming at least 2000 yards at a swim. Sometimes I get crazy and do 2500. I recently had another pulmonary function test. Went and saw my pulmonologists a few weeks ago and got some great news. My lungs are functioning just as good as anyone my age. My oxygen conversion is at 96%. I have just a small problem with expelling all the air from that right lung. I asked my doctor if staying active and swimming helped with me over come the diaphragm problem. All he could say was whatever I'm doing I should keep doing it and he doesn't want to see me anymore. Can't ask for anything better than that. I can't say staying active will help others with a diaphragm issue but I do believe it helped me a lot.
Hi John -- one of the people in the FB group for people with paralyzed diaphragms had the same experience. As a result of his being a superstar (my word) and consistent strong swimmer, he was able to restore his lung function completely and recover from the effects of his paralyzed diaphragm through swimming. It's pretty amazing how the body can heal itself. I'm so happy for you! Every time I read one of his posts on FB that mentioned swinging, I thought about you. You were the first person who reached out to me when I started my journey looking for information about my paralyzed diaphragm, and that really meant a lot. Thank you!
Hi John -- one of the people in the FB group for people with paralyzed diaphragms had the same experience. As a result of his being a superstar (my word) and consistent strong swimmer, he was able to restore his lung function completely and recover from the effects of his paralyzed diaphragm through swimming. It's pretty amazing how the body can heal itself. I'm so happy for you! Every time I read one of his posts on FB that mentioned swinging, I thought about you. You were the first person who reached out to me when I started my journey looking for information about my paralyzed diaphragm, and that really meant a lot. Thank you!
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@dberrios I don't have experience with diaphragm issues, but I wanted to share a research study about plication surgery. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2996377/
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/
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1 ReactionMy husband was also just diagnosed with a R paralyzed diaphragm and has to have O2 constantly. Not much in the way of education or helpful suggestions from his dr, I feel like we are on our own. Any help or suggestions would be greatly appreciated.
The right side of my diaphragm is parylized. Having the phrenic nerve looked at next month at the neurologist. I am contemplating seeing a group at Mayo to access this and guide me with the proper procedure. Do you know HOW the nerve is diagnosed?
Welcome @topjob67 and @lms4ever. You may also wish to review this related discussion in the Lung Health group:
– Paralyzed Diaphragm https://connect.mayoclinic.org/discussion/paralyzed-diaphragm/
Topjob, what issue does your husband find most challenging?
LMS, here’s some information on how nerve damage is diagnosed https://www.cedars-sinai.org/health-library/diseases-and-conditions/p/paralyzed-diaphragm.html
If you would like to request an appointment at Mayo Clinic, here is the contact information: http://mayocl.in/1mtmR63
This is my update. My name is John and was diagnosed with a paralyzed right diaphragm in late 2017. Went through all the testing that my local hospital could do. I passed two pulmonary function tests in 2018 and 2019. I was then and still am an active swimmer. A member of US Masters Swimming and Arizona Senior Games. It was tough swimming when I was first diagnosed but I kept at it. I'm back to swimming at least 2000 yards at a swim. Sometimes I get crazy and do 2500. I recently had another pulmonary function test. Went and saw my pulmonologists a few weeks ago and got some great news. My lungs are functioning just as good as anyone my age. My oxygen conversion is at 96%. I have just a small problem with expelling all the air from that right lung. I asked my doctor if staying active and swimming helped with me over come the diaphragm problem. All he could say was whatever I'm doing I should keep doing it and he doesn't want to see me anymore. Can't ask for anything better than that. I can't say staying active will help others with a diaphragm issue but I do believe it helped me a lot.
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2 ReactionsCongratulations, John. Amazing work and an inspiration to others.
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1 Reaction@gillers198 Hi John, I was glad to read your update and am really glad you are doing so well. An update from me follows, namely I'm in the process of totally switching gears. Since I have been coping well with my left paralyzed diaphragm, I had decided to put off plication surgery until my symptoms became really debilitating. Because of my age (75), I had some concerns about whether this was the right decision that might compromise my health prospects in the future. Because my paralyzed diaphragm is floating, my internal organs are moving up into my chest cavity, which I was afraid might lead to serious problems with them in the future. Additionally, I didn't know if there was an age limit after which plication surgery couldn't be performed or if there was a point of no return where the diaphragm became so atrophied plication wasn't possible.
Because I've evidently had this condition for so long, I knew there wasn't any hope of my phrenic nerve healing itself. For people with a recent injury to the phrenic nerve that's resulted in a paralyzed diaphragm, it is recommended they wait for a couple of years to see if the phrenic nerve will heal itself before pursuing other surgical options. I also ruled out diaphragm pacing and the nerve graft for a variety of reasons and don't know if I would have qualified for them anyway.
Yesterday I had a videoconference with Dr. Mark Ginsburg, chair of the Diaphragm Center at Columbia University Medical Center in NY. He probably knows more about this rare condition, i.e. paralyzed diaphragms, and how to treat them than anyone in the world. He said if I waited age wouldn't preclude me from getting plication surgery later and the diaphragm was never too atrophied for plication surgery to be successful. He brought up something I had not even thought about that has prompted me to have plication surgery in the near future. He said that even though my paralyzed diaphragm wasn't adversely impacting my quality of life, it was putting my life at risk. My internal organs moving up into my chest cavity were compressing my left lung to the point it wasn't working, and I was relying totally on my right lung to breath. He said if I got pneumonia, COVID, or some other lung disease I would be in serious trouble, ie might not survive. By having the plication surgery done to flatten my diaphragm and hold it in place, the capacity of my left lung would almost return to normal ... and I would have two functioning lungs.
There have been incredible strides in doing plication surgery. Most experienced thoracic surgeons are using VAT minimally invasive surgery with robots for plication surgery. They make three small incisions in the abdomen, use robots to do the folds and sewing of the diaphragm, and tie it in place. Dr. Ginsberg said the surgery would take 30 minutes. Patients generally go home the next day. Everyone is different; but the recovery time for most people on the facebook paralyzed diaphragm page who have undergone this minimally invasive plication procedure has been a couple of weeks. They took Tylenol to deal with whatever pain and discomfort they had. For some it has been longer and more painful.
Anyway, I'm totally rethinking things and will be pursuing plication surgery in the near future...after I lose more weight. I'm lucky I have some options of where to go...because there aren't a lot of skilled thoracic surgeons doing this type of surgery. If I were still in MN, I'd go to Mayo in a heartbeat. But it's too far for me to get there, particularly with COVID still raging. I'm hoping to have Dr. Ginsberg do the procedure in New York, since I think he is the best and has the most experience doing them. Another option is Cleveland Clinic. Anyway, I'll let you know how things go in a few months. I'm really glad you are doing so well! Everyone says exercise is key when you have a paralyzed diaphragm, which you can certainly attest to. Take care...Nancy
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1 ReactionAugust 2021 I was diagnosed with a elevated right diaphragm, after suffering from extreme shortness of breath for previous months. After much testing, radiological, neuro, and pulmonology my diagnoses was paralysis of right diaphragm. My local neurologist did a nerve conduction study on the right phrenic nerve, the was no response/reaction. Most of the local doctors didn’t have a clue how to treat me. They would tell me things like even though my right lung was collapsed, ly left lung should compensate. I couldn’t even walk across my house without stopping to rest/breath. I began to do my research about possible treatments. My pulmonologist recommended waiting 12 months before seeking surgical treatment, even though I was having to use oxygen and couldn’t really do any activity plus had to use a Trilogy ventilator at night. I did not wait and contacted the Mayo Clinic after researching plication surgery. I went to Jacksonville FL Mayo Clinic, spent a week getting numerous tests completed and then was referred to Dr Ian Mackey, cardio thoracic surgeon at Mayo Clinic Jacksonville. He reviewed all of my tests and once he looked at my pulmonary function studies gave me the option of plication surgery. I had plication of right diaphragm March 4, 2022, this was robotically assisted laparoscopic surgery. I have four 1-2” scars that are now barely visible. I honestly can not say enough about the progress I have made since surgery. I am 6 months post op and my activity has been slowly but steadily progressing. Once I got past the first three weeks of no lifting, then three months of no lifting over 10 pounds, my progress has been amazing. Currently I am able to walk/hike 4-7 miles, I’m back at gym and lifting weights (carefully) and I’m able to run/jog 30min at a time. The quality of my life has improved beyond what I thought I was capable of with only one lung/diaphragm working. I am one blessed 53 year old lady!! I’m open to any questions
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1 ReactionHi John -- one of the people in the FB group for people with paralyzed diaphragms had the same experience. As a result of his being a superstar (my word) and consistent strong swimmer, he was able to restore his lung function completely and recover from the effects of his paralyzed diaphragm through swimming. It's pretty amazing how the body can heal itself. I'm so happy for you! Every time I read one of his posts on FB that mentioned swinging, I thought about you. You were the first person who reached out to me when I started my journey looking for information about my paralyzed diaphragm, and that really meant a lot. Thank you!
oops -- automatic generated typo -- swimming NOT swinging. I can't figure out how to edit comments. Sorry.