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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grump | @grump | Jun 20, 2021
In reply to @nla4625 "I listened to an informative 30 minute discussion with Dr. Mary Massery about the amazing large..." + (show)
@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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Thank you. Explains some of my systems. Have you had the surgery to pull down and attach the diaphragm?

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2 replies
nla4625 | @nla4625 | Jun 20, 2021
In reply to @grump "Thank you. Explains some of my systems. Have you had the surgery to pull down and..." + (show)
@grump

Thank you. Explains some of my systems. Have you had the surgery to pull down and attach the diaphragm?

Jump to this post

@grump I'm coping pretty well so haven't had plication surgery yet. The thoracic surgeon who diagnosed my paralyzed diaphragm wanted to schedule it right away; but I view surgery as a last resort, not a starting point. Rather, I've been trying to lose weight, build up my strength and stamina, and learn as much as I can about this condition.

In addition to plication surgery, there are a couple of other options available, depending on what caused the damage to the phrenic nerve, how recent that was, and the extent of damage: 1) Wait and see. Sometimes the phrenic nerve heals itself, which is pretty amazing, and the diaphragm just starts working again. 2) Diaphragmatic Pacemaker. Dr. Raymond Onders at the University Hospitals Cleveland Medical Center attaches a diaphragm pacemaker that works like a heart pacemaker to stimulate the phrenic nerve to get the diaphragm to work. 3. Nerve Graft. Dr. Matthew Kaufman at the Institute for Advanced Reconstruction in Shewsbury, New Jersey, is grafting a working nerve onto the damaged nonworking phrenic nerve.

I never saw any value to Facebook until I joined a Facebook group for people with paralyzed diaphragms that has around 750 members. I'm learning so much from them and their first-hand experiences and highly recommend it. Are you going to have the plication surgery or did you have it?

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3 replies
grump | @grump | Jun 20, 2021
In reply to @nla4625 "@grump I'm coping pretty well so haven't had plication surgery yet. The thoracic surgeon who diagnosed..." + (show)
@nla4625

@grump I'm coping pretty well so haven't had plication surgery yet. The thoracic surgeon who diagnosed my paralyzed diaphragm wanted to schedule it right away; but I view surgery as a last resort, not a starting point. Rather, I've been trying to lose weight, build up my strength and stamina, and learn as much as I can about this condition.

In addition to plication surgery, there are a couple of other options available, depending on what caused the damage to the phrenic nerve, how recent that was, and the extent of damage: 1) Wait and see. Sometimes the phrenic nerve heals itself, which is pretty amazing, and the diaphragm just starts working again. 2) Diaphragmatic Pacemaker. Dr. Raymond Onders at the University Hospitals Cleveland Medical Center attaches a diaphragm pacemaker that works like a heart pacemaker to stimulate the phrenic nerve to get the diaphragm to work. 3. Nerve Graft. Dr. Matthew Kaufman at the Institute for Advanced Reconstruction in Shewsbury, New Jersey, is grafting a working nerve onto the damaged nonworking phrenic nerve.

I never saw any value to Facebook until I joined a Facebook group for people with paralyzed diaphragms that has around 750 members. I'm learning so much from them and their first-hand experiences and highly recommend it. Are you going to have the plication surgery or did you have it?

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I have no nerve damage. They checked that. My diaphragm has raised way up squishing over half of my lung. My activities kinda limited as just can’t breathe

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1 reply
grump | @grump | Jun 20, 2021
In reply to @nla4625 "@grump I'm coping pretty well so haven't had plication surgery yet. The thoracic surgeon who diagnosed..." + (show)
@nla4625

@grump I'm coping pretty well so haven't had plication surgery yet. The thoracic surgeon who diagnosed my paralyzed diaphragm wanted to schedule it right away; but I view surgery as a last resort, not a starting point. Rather, I've been trying to lose weight, build up my strength and stamina, and learn as much as I can about this condition.

In addition to plication surgery, there are a couple of other options available, depending on what caused the damage to the phrenic nerve, how recent that was, and the extent of damage: 1) Wait and see. Sometimes the phrenic nerve heals itself, which is pretty amazing, and the diaphragm just starts working again. 2) Diaphragmatic Pacemaker. Dr. Raymond Onders at the University Hospitals Cleveland Medical Center attaches a diaphragm pacemaker that works like a heart pacemaker to stimulate the phrenic nerve to get the diaphragm to work. 3. Nerve Graft. Dr. Matthew Kaufman at the Institute for Advanced Reconstruction in Shewsbury, New Jersey, is grafting a working nerve onto the damaged nonworking phrenic nerve.

I never saw any value to Facebook until I joined a Facebook group for people with paralyzed diaphragms that has around 750 members. I'm learning so much from them and their first-hand experiences and highly recommend it. Are you going to have the plication surgery or did you have it?

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I am seriously considering it -have an appt with a surgeon

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1 reply
nla4625 | @nla4625 | Jun 20, 2021
In reply to @grump "I have no nerve damage. They checked that. My diaphragm has raised way up squishing over..." + (show)
@grump

I have no nerve damage. They checked that. My diaphragm has raised way up squishing over half of my lung. My activities kinda limited as just can’t breathe

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@grump. I'll be anxious to hear what the surgeon recommends so hope you will let us know. I hope he is a thoracic surgeon experienced in doing plication surgery using video assisted technology (VAT) and robots. It's a minimally invasive way to do chest surgery with less wear and tear on the body. I watched a video about plication surgery using robots on You Tube, and it's pretty amazing. Not being able to breath is awful; and if I were having serious difficulty, I'd have the surgery now after getting a second opinion that it was the right thing to do. If your nerve isn't damaged, you might want to look at a diaphragmic pacemaker as an option to plication surgery and contact Dr. Raymond Onders at University Hospitals Cleveland Medical Center. One of the men in the paralyzed diaphragm facebook group had this done with great success. He said Dr. Onders is the only person in the country doing it. Good luck! Nancy

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1 reply
Amanda Roe | @amandajro | Jun 20, 2021
In reply to @grump "Thank you. Explains some of my systems. Have you had the surgery to pull down and..." + (show)
@grump

Thank you. Explains some of my systems. Have you had the surgery to pull down and attach the diaphragm?

Jump to this post

Hello @grump and welcome to Mayo Clinic Connect. I can see that members @nla4625 has responded to you and the pair of you are trading notes, which is great! Like Nancy mentioned, will you please come back to the discussion once you meet with your surgeon?

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nla4625 | @nla4625 | Jun 22, 2021

Diaphragm Pacing as a treatment for a paralyzed diaphragm when the phrenic nerve is still viable. In a previous post, I gave the wrong information, which I want to correct. The pacemaker is attached directly to the diaphragm, not the phrenic nerve as I thought, and shocks it to work. The person on the facebook page for people with paralyzed diaphragms who had it done says people generally know within 3 months if it is going to work or not, but the success rate has been very good. The technique is also used for people with spinal injuries and ALS to get them off ventilators and in children. Dr. Onders at University Hospitals in Cleveland does the procedure. https://en.wikipedia.org/wiki/Diaphragm_pacing

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grump | @grump | Jun 23, 2021
In reply to @grump "I am seriously considering it -have an appt with a surgeon" + (show)
@grump

I am seriously considering it -have an appt with a surgeon

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Recommended the surgery and I will be doing it. Says should (but cannot guarantee) 60-80% improvement to my breathing

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2 replies
Leonard | @jakedduck1 | Jun 23, 2021
In reply to @grump "Recommended the surgery and I will be doing it. Says should (but cannot guarantee) 60-80% improvement..." + (show)
@grump

Recommended the surgery and I will be doing it. Says should (but cannot guarantee) 60-80% improvement to my breathing

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@grumpy
A nerve was cut during one of my cousins heart surgeries (3) does that disqualify him from having this surgery?
Thank you,
Jake

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1 reply
nla4625 | @nla4625 | Jun 23, 2021
In reply to @grump "Recommended the surgery and I will be doing it. Says should (but cannot guarantee) 60-80% improvement..." + (show)
@grump

Recommended the surgery and I will be doing it. Says should (but cannot guarantee) 60-80% improvement to my breathing

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@grump. Thanks for the update! I really hope the plication surgery goes well for you. Where are you having it done?

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