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.

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

ibw295 | @ibw295 | Aug 13, 2021
In reply to @charlier "Does anyone else with a left paralyzed diaphragm have digestion issues? I have been getting heartburn,..." + (show)
@charlier

Does anyone else with a left paralyzed diaphragm have digestion issues? I have been getting heartburn, feeling of fullness and mild pain in my lower left abdomen. I also have trouble swallowing sometimes. I have read you can have issues like this, I just did not think I would win the jackpot and get all of them.

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You might want to see a gastroenterologist. Does not sound exactly like GERD, but perhaps something not unlike it. Feel better.

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alafleur | @alafleur | Aug 18, 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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How would I find Facebook group thanks

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1 reply
nla4625 | @nla4625 | Aug 18, 2021
In reply to @alafleur "How would I find Facebook group thanks" + (show)
@alafleur

How would I find Facebook group thanks

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If this link doesn't work, just do a google search on Facebook Paralyzed Diaphragm Group. I hope this will get you there:
http://www.facebook.com/groups/ParalyzedDiaphragm/ Good luck!

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patsyf | @patsyf | Dec 4, 2021
In reply to @lk3xs "Prior to my THR my chest xray was good. Months later I had respiratory illness so..." + (show)
@lk3xs

Prior to my THR my chest xray was good. Months later I had respiratory illness so my family dr. ordered a xray and the paralysis diaphragm was seen.
The orthopedic dr. never took responsibility for it but only makes sense. They had to give me two epidurals in spine because they didn't feel they got the first one right! Very painful.
So I now have left side paralysis diaphragm. I noticed it if I do long walks. I get shortness of breath. I went to cardiologist because of symptoms. The did echo and said it was more difficult because diaphragm pushing up on it and harder to see.
All tests came back normal. Did sniff test and pulmonary dr. said if I had severe symptoms I had surgery or could correct itself. That was 2014 so far not happening. Just angry this seems a surgery error and no one takes responsibility.

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A spine epidural required by insurance for a pain stimulator paralyzed my right diaphragm 3/2015. I felt the injection burn going up my back and evaporate at my shoulders. Patient before me complained of a painful epidural also. Three days later I was in ER short of breath. All prior chest x-rays were clear. Wish we could stop insurance from forcing epidurals. I asked not to do epidurals they don't work for me. Doctor insisted it was required by insurance.

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1 reply
funger | @funger | Dec 7, 2021
In reply to @nla4625 "@charlier A lot of people in the facebook group for people with paralyzed diaphragms have these..." + (show)
@nla4625

@charlier A lot of people in the facebook group for people with paralyzed diaphragms have these symptoms. I think there are over 750 members of the group now, all of whom have paralyzed diaphragms. It is such a rare condition, and it is comforting to connect with people who know precisely what you are going through. People in the group are so generous with answering questions, supporting each other, etc. I never saw the value of facebook before but do now. I've learned so much about my paralyzed diaphragm, symptoms, treatment options, recovery time, specialists, etc. and think you might too. I hope you will consider joining. Take care! Nancy

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How does one join this diaphragm group? Jim C

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2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Dec 7, 2021
In reply to @funger "How does one join this diaphragm group? Jim C" + (show)
@funger

How does one join this diaphragm group? Jim C

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Hi Jim, if you’re looking to join the diaphragm group here in Mayo Connect, you’re already right where you need to be. Feel free to ask your questions here.

If you want to reply to a specific person’s post, just make sure you click the reply button in that comment. That way the person will be notified of the activity in their discussion.

For more help, here’s the “how to” page for the forum with some great tips for navigating the site. https://connect.mayoclinic.org/get-started-on-connect/

Do you have paralyzed diaphragm symptoms?

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1 reply
funger | @funger | Dec 7, 2021
In reply to @loribmt "Hi Jim, if you’re looking to join the diaphragm group here in Mayo Connect, you’re already..." + (show)
@loribmt

Hi Jim, if you’re looking to join the diaphragm group here in Mayo Connect, you’re already right where you need to be. Feel free to ask your questions here.

If you want to reply to a specific person’s post, just make sure you click the reply button in that comment. That way the person will be notified of the activity in their discussion.

For more help, here’s the “how to” page for the forum with some great tips for navigating the site. https://connect.mayoclinic.org/get-started-on-connect/

Do you have paralyzed diaphragm symptoms?

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My right lung is operating at about half capacity. Have shortness of breath. Going to pulmonologist next week.
Thank you for responding.

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2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Dec 7, 2021
In reply to @funger "My right lung is operating at about half capacity. Have shortness of breath. Going to pulmonologist..." + (show)
@funger

My right lung is operating at about half capacity. Have shortness of breath. Going to pulmonologist next week.
Thank you for responding.

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Jim, I found a more current discussion with members who also have right side diaphragm paralysis. Here’s a link to that discussion group.

https://connect.mayoclinic.org/discussion/paralyzed-right-side-of-diaphragm/

Members @giller198 and @lms4ever also share the same condition. Hopefully they’ll be able to offer you some suggestions. It helps to know you’re not alone with these symptoms.

I’m happy to hear you’ll be seeing a pulmonologist next week. It will be comforting to get some answers.
How long have you had the shortness of breath? Were you ill recently?

https://connect.mayoclinic.org/comment/639240/
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1 reply
nla4625 | @nla4625 | Dec 7, 2021
In reply to @funger "How does one join this diaphragm group? Jim C" + (show)
@funger

How does one join this diaphragm group? Jim C

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@funger. Jim -- if you do a google search on "Facebook Group for People with Paralyzed Diaphragms" you should be able to get there. People on the site have undergone all the options for treating paralyzed diaphragms, ie waiting two years to see if the phrenic nerve heals itself if it is a recent occurrence, diaphragm pacemaker, nerve graft, and plication surgery. We are all experiencing similar symptoms and issues to varying degrees, and some of the members probably know more than most doctors about the condition. I joined facebook at age 74 and have come to appreciate its value. I've Iearned a lot from being a member in this group and benefited greatly. I hope you will too.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 8, 2021
In reply to @patsyf "A spine epidural required by insurance for a pain stimulator paralyzed my right diaphragm 3/2015. I..." + (show)
@patsyf

A spine epidural required by insurance for a pain stimulator paralyzed my right diaphragm 3/2015. I felt the injection burn going up my back and evaporate at my shoulders. Patient before me complained of a painful epidural also. Three days later I was in ER short of breath. All prior chest x-rays were clear. Wish we could stop insurance from forcing epidurals. I asked not to do epidurals they don't work for me. Doctor insisted it was required by insurance.

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Hi Patsy, welcome. Did you receive successful treatment to recover from the unilateral paralysis?

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