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.

Interested in more discussions like this? Go to the Lung Health Support Group.

@nla4625

@charlier I'm really sorry you're facing two major medical issues at once and am glad you reached out on MayoConnect for support. I know I can only deal with one medical crisis at a time; and unless my lung problem was life threatening, I'd do whatever I could to rid myself of pain before I tackled it. However, only you with the advice of your doctors and family can decide what's best for you. I'm probably showing my ignorance here on how the lungs actually work; but a question I would ask the pulmonologist is what is causing my lung to work at only 65% efficiency and what can be done about that. That is the most important lung issue I'd be concerned about. Is it being caused by the collapsed lower lobe of my lung...and can that be reversed? Is it being caused by the paralyzed left diaphragm, which plication surgery might help with. Or is it a combination of both. Would plication surgery have any impact on the collapsed lower lobe issue? What improvement in lung function could you expect if you had plication surgery?

I have a paralyzed left diaphragm but my lungs are operating within normal parameters. The thoracic surgeon who would do my plication surgery said my breathing wouldn't be restored to 100%. My condition isn't life-threatening; I pace myself; and I'm doing breathing exercises and building up my stamina to avoid having plication therapy.

When you're ready, I encourage you to read through the posts on this thread about paralyzed diaphragms, as well as other lung issues like what a collapsed lower lung lobe is, how it affects you, and what can be done about it. I've really learned a lot that has helped me in my decision-making process and hope you will too. Good luck...and please keep us posted. Nancy

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My left diagram is very elevated and causing the other issues. My back has been bothering me to the point I can not take it anymore. With the Covid issue all my appointments for my back issues where pushed back months and months. My diaphragm issue started in October of last year

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@nla4625

@giller198 Hi John, Yes, I have a spirometer and need to get it out. I had a pulmonary function test that said my lungs were working within normal parameters and a sniff test that said my phrenic nerve was not functioning. I didn't have that other test you mentioned to see if the phrenic nerve was working, but based on the sniff test I'm pretty sure it isn't. One of the people on Mayo Connect, maybe Jennifer Hunt, said something about massaging the fascia that peaked my interest. I did some research on that and found that one of the country's fascia experts is associated with the medical center I'm going to. I sent him an email this morning to see if he thought massaging my fascia would help with a paralyzed diaphragm. I'll let you know what he says. I bought some flower seeds today and am looking forward to planting them! Thanks for checking in. I hope you are still doing well. Nancy

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Hi Nancy, It's John. Any word on the fascia procedure? All is good here. Still swimming, in fact started doing 200 yard swims without stopping. You take care.

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CPAP and BIPAP. I ran across a Paralyzed Diaphragm facebook group with over 700 members. Several of them mentioned CPAP and BIPAP machines as helping them...with both sleeping and breathing issues. I don't recall anyone on this thread mentioning either of them so am bringing it up. I'm on a CPAP machine and routinely take several deep breaths after I put the mask on and before I fall asleep. I never had problems with sleeping, but I honestly think that deep breathing while on the CPAP machine has helped my breathing...how I'm not quite sure. Has anyone else found this?

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@nla4625

CPAP and BIPAP. I ran across a Paralyzed Diaphragm facebook group with over 700 members. Several of them mentioned CPAP and BIPAP machines as helping them...with both sleeping and breathing issues. I don't recall anyone on this thread mentioning either of them so am bringing it up. I'm on a CPAP machine and routinely take several deep breaths after I put the mask on and before I fall asleep. I never had problems with sleeping, but I honestly think that deep breathing while on the CPAP machine has helped my breathing...how I'm not quite sure. Has anyone else found this?

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@nla4625
My cousin uses a Bi-Pap with oxygen and is very helpful. His diaphragm was partially paralyzed from multiple heart surgeries.
Take care,
Jake

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@giller198

Hi Nancy, It's John. Any word on the fascia procedure? All is good here. Still swimming, in fact started doing 200 yard swims without stopping. You take care.

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Hi John, Even though I've had both Covid shots, I'm reluctant to visit medical professionals and others who would be in close proximity to my face. Thus, I haven't had the fascia manipulation yet. I'm still planning on having it and will let you know how it goes. I'm glad you are doing well! I read that wading chest high in water and taking deep breaths is wonderful therapy and will try that when it gets warmer. My nephew and his family have an outdoor pool that they have invited me to use. I thought spring had arrived but woke up the past two mornings to freshly fallen snow. It melted quickly and soaked in, which will help our farmers. I'm happy to report my stamina is improving, which I'm really glad about. I'm loving being able to get out of the house more and looking forward to planting a small garden with flowers in a few weeks. Thanks for checking in. Nancy

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@nla4625

CPAP and BIPAP. I ran across a Paralyzed Diaphragm facebook group with over 700 members. Several of them mentioned CPAP and BIPAP machines as helping them...with both sleeping and breathing issues. I don't recall anyone on this thread mentioning either of them so am bringing it up. I'm on a CPAP machine and routinely take several deep breaths after I put the mask on and before I fall asleep. I never had problems with sleeping, but I honestly think that deep breathing while on the CPAP machine has helped my breathing...how I'm not quite sure. Has anyone else found this?

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Hello, @nia4625, @jakedduck1, and all....I have severe sleep apnea for many years. Used a c-pap successfully until at some point several years ago I stopped. I've been going to Mayo Clinic, Florida for a few years now for other issues that are happily better or I'm dealing with better and during all the stuff one thing was difficulty breathing, shortness of breath, poor sleep, all the other symptoms you surely know.

I went to an overnight sleep study at the Mayo sleep dept. I now use a bi-pap nightly, religiously!!!! don't miss a night. I, of course, sleep much better. In fact, I sleep well and generally have good deep sleep, wake up rested. Not always and do take MMJ 1:1 tincture at night for pain/anxiety/sleep aid.

The bi-pap, room air only, provides good, moist, warmed air that I breath in deeply and it causes me to breath out. I often seem to forget to breath, so this is a very good thing for me. I 'forget' or stop breathing during the day, autonomic neuropathy a little bit of a problem, but even the daily breathing is more regular and consistent. I tested with several 60+ seconds of not breathing and other episodes nightly, so this is surely a God send for me.

I have had no serious chest infections for several months, since last year. That's extremely unusual for me, as I tend to never get a cold...I get a sore throat and the next day I have a lot of congestions and bronchitis. I'm usually ill with bronchitis several times annually and an occasional pneumonia, but since this bi-pap, I breath better, can get deeper breath, and am working on the diaphramatic breathing.

This one item in my medical arsenal is helping every part of my body and mind, overall health is improved. Thinking is much clearer for this and other reasons. I'm not ok, of course, I still have a lot of issues going on, but it's a true gift. So, perhaps this is helpful to someone and you take control and follow through to do this good thing. Blessings on your breathing journey, elizabeth

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@ess77

Hello, @nia4625, @jakedduck1, and all....I have severe sleep apnea for many years. Used a c-pap successfully until at some point several years ago I stopped. I've been going to Mayo Clinic, Florida for a few years now for other issues that are happily better or I'm dealing with better and during all the stuff one thing was difficulty breathing, shortness of breath, poor sleep, all the other symptoms you surely know.

I went to an overnight sleep study at the Mayo sleep dept. I now use a bi-pap nightly, religiously!!!! don't miss a night. I, of course, sleep much better. In fact, I sleep well and generally have good deep sleep, wake up rested. Not always and do take MMJ 1:1 tincture at night for pain/anxiety/sleep aid.

The bi-pap, room air only, provides good, moist, warmed air that I breath in deeply and it causes me to breath out. I often seem to forget to breath, so this is a very good thing for me. I 'forget' or stop breathing during the day, autonomic neuropathy a little bit of a problem, but even the daily breathing is more regular and consistent. I tested with several 60+ seconds of not breathing and other episodes nightly, so this is surely a God send for me.

I have had no serious chest infections for several months, since last year. That's extremely unusual for me, as I tend to never get a cold...I get a sore throat and the next day I have a lot of congestions and bronchitis. I'm usually ill with bronchitis several times annually and an occasional pneumonia, but since this bi-pap, I breath better, can get deeper breath, and am working on the diaphramatic breathing.

This one item in my medical arsenal is helping every part of my body and mind, overall health is improved. Thinking is much clearer for this and other reasons. I'm not ok, of course, I still have a lot of issues going on, but it's a true gift. So, perhaps this is helpful to someone and you take control and follow through to do this good thing. Blessings on your breathing journey, elizabeth

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@ess77
Yep, no doubt about it your going for a record in the Guinness book of world records.
My cousin is on 24 seven oxygen so he uses that with his BiPAP. He used to have a CPAP but they decided to give him this thing well not give I paid for it and it was far from free. I’m not sure of what the differences between the two but someone told me that a BiPAP makes it easier to exhale but I’m not sure if they knew what they were talking about or not. Again I don’t know but isn’t the BiPAP capable of more functions? I have a question for you Lizzy, If a person has sleep apnea do they know about it? I asked that because I have poor sleeping habits and usually wake up at 1 AM and I’m always awake by 3 AM and seldom ever go back to sleep and wondered if that could have anything to do with sleep apnea. As you well know sleep is very important in epilepsy. I assume it’s not a trigger for me since I sleep so poorly. Are your illnesses related to one another or are they all individual problems unrelated to one another? also I want to thank you for the message you sent me. I know I have been remiss in answering. if you’re ever in California be sure to stop by let me know and I’ll give you my address I will have one heck of a candy party. If it has sugar in it I have it. Oh the one thing I don’t eat is donuts and I miss them terribly. Earlier today I watched a video regarding diet and neuropathy and the woman said never never eat sugar and I swear if I could’ve reached her through my phone I would’ve strangled her right then and there!!!
Take care Liz my friend,
Jake

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Leonard, I just lost the entire message i was finishing to you about all the above. So sorry, my friend. It's almost 1a.m. and I'm beat. Need to hit the sack so will chat in the morning. Hope you have a good night's sleep. if not, if you snore or snort or gasp during the night, you may have apnea and could benefit from a c-pap. Suggest you speak with your doc.....important. See you later, gator. Blessings, elzabeth

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I listened to an informative 30 minute discussion with Dr. Mary Massery about the amazing large thin parachute shaped muscle called the diaphragm and some of the important things it does if it's working properly: stabilizes posture, regulates chest cavity pressure, and facilitates breathing. I had no idea about the first two; but since my left diaphragm is paralyzed and not working, I now understand some odd and seemingly unrelated symptoms I'm experiencing can be attributed to that. Shortness of breath and breathing problems are no brainers. Dr. Massery explained that two issues arise when a malfunctioning diaphragm isn't able to regulate chest cavity pressure. Pressure escapes, resulting in chest pain at the top of the chest cavity and incontinence at the lower end. She also explained that the loss of structural support from a diaphragm that isn't working properly results in loss of balance and fear of falling. These are three things I've been dealing with that I never connected with my left PD but attributed to old age and other things. She has a website and may have some videos on YouTube. I'm seeking physical therapy for posture restoration, balance, and incontinence which should be helpful...

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@nla4625

I listened to an informative 30 minute discussion with Dr. Mary Massery about the amazing large thin parachute shaped muscle called the diaphragm and some of the important things it does if it's working properly: stabilizes posture, regulates chest cavity pressure, and facilitates breathing. I had no idea about the first two; but since my left diaphragm is paralyzed and not working, I now understand some odd and seemingly unrelated symptoms I'm experiencing can be attributed to that. Shortness of breath and breathing problems are no brainers. Dr. Massery explained that two issues arise when a malfunctioning diaphragm isn't able to regulate chest cavity pressure. Pressure escapes, resulting in chest pain at the top of the chest cavity and incontinence at the lower end. She also explained that the loss of structural support from a diaphragm that isn't working properly results in loss of balance and fear of falling. These are three things I've been dealing with that I never connected with my left PD but attributed to old age and other things. She has a website and may have some videos on YouTube. I'm seeking physical therapy for posture restoration, balance, and incontinence which should be helpful...

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Added note -- also seeking respiration therapy

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