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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It’s not fun!!!!
Where did you have surgery?
Was it laparoscopic or regular ?
Was recovery difficult?
I am trying to decide if I want to have surgery or “just leave well enough alone” which isn’t really acceptable.
Thanks you
Toby

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@seniordon09

I was int the hospital with a blood clot that went thru my lungs !
After a week in the hospital, I was moved to another hospital for physical therapy !
One night I was bored, so I walked to the nurses station and I almost didn't make it back to my room because I couldn't breathe !
The next day the doctor said I had asthma, but he was so wrong and after another week went by, I found out that the left side of diaphragm was paralyzed !!
I had surgery to put stitches across it !
I've been battling with shortness of breath ever since !
I've made numerous trips to the ER because I thought that I was taking my last breath ! FRIGHTENED !!
Donald Goss

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Don -- this is pretty scary. I strongly urge you to join the facebook page for people with paralyzed diaphragms. There are over 1100 people on it now who have paralyzed diaphragms and hundreds who have had the plication surgery you had where the surgeons sew pleats to hold the paralyzed diaphragm down. The knowledge these people have based on first hand experience and their own research is amazing. They are so supportive and answer any and all questions. Most doctors don't know much about paralyzed diaphragms, and a universal complaint is surgeons don't tell you anything about how to recover from plication surgery. People on the facebook group can help you through it. I thought facebook was a waste of time but joined it just to join this group. It was a really smart decision for me. Did they cut your chest open or use robots and minimally invasive techniques? The method of the operation will greatly determine your recovery. I hope your recovery will go well. Best wishes!

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@seniordon09

I was int the hospital with a blood clot that went thru my lungs !
After a week in the hospital, I was moved to another hospital for physical therapy !
One night I was bored, so I walked to the nurses station and I almost didn't make it back to my room because I couldn't breathe !
The next day the doctor said I had asthma, but he was so wrong and after another week went by, I found out that the left side of diaphragm was paralyzed !!
I had surgery to put stitches across it !
I've been battling with shortness of breath ever since !
I've made numerous trips to the ER because I thought that I was taking my last breath ! FRIGHTENED !!
Donald Goss

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Don -- one other thought. You might get a chest x-ray to see if your diaphragm is still stitched down. The stitches might not have held. One person on the FB page said the stitching material his surgeon used was faulty and the surgeon had to redo the procedure the next day. Hard to believe, but it evidently happened. Some plication surgeries don't hold. Good luck! Nancy

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About 3 years ago, a blood clot went thru my lungs and heart and it almost killed me ! Now I have Afib and the left side of my diaphragm paralyzed ! And just last year I had a terrible case of pneumonia and that almost killed me ! My lungs are heart are in good condition but ever since my diaphragm became paralyzed, I've been short of breath ! I can't even shower that I can't breath, putting my cloths on is very difficult for me to breathe ! Everything I try to do is difficult for me to breathe ! I use oxygen at home most all the time !

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@seniordon09

About 3 years ago, a blood clot went thru my lungs and heart and it almost killed me ! Now I have Afib and the left side of my diaphragm paralyzed ! And just last year I had a terrible case of pneumonia and that almost killed me ! My lungs are heart are in good condition but ever since my diaphragm became paralyzed, I've been short of breath ! I can't even shower that I can't breath, putting my cloths on is very difficult for me to breathe ! Everything I try to do is difficult for me to breathe ! I use oxygen at home most all the time !

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@seniordon09, to help connect you with members like @giller198 @toby77 @sdstoryteller @funger @topjob67 @southerncharm @ibw295, who have experience with a paralyzed diaphragm, I moved your post to this discussion:
- Paralyzed Diaphragm: https://connect.mayoclinic.org/discussion/paralyzed-diaphragm/

You might also be interested in these related discussions:
- Paralyzed right side of diaphragm: How to treat? https://connect.mayoclinic.org/discussion/paralyzed-right-side-of-diaphragm/

- Treatment Options for Paralyzed Diaphragm https://connect.mayoclinic.org/discussion/treatment-options-for-paralyzed-diaphragm/

REPLY
@seniordon09

About 3 years ago, a blood clot went thru my lungs and heart and it almost killed me ! Now I have Afib and the left side of my diaphragm paralyzed ! And just last year I had a terrible case of pneumonia and that almost killed me ! My lungs are heart are in good condition but ever since my diaphragm became paralyzed, I've been short of breath ! I can't even shower that I can't breath, putting my cloths on is very difficult for me to breathe ! Everything I try to do is difficult for me to breathe ! I use oxygen at home most all the time !

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Have you had a diaphragm plication ?

It helped me to breath better. And not cough constantly.

You need a cardio/thoracic surgeon.

REPLY
@nla4625

Don -- this is pretty scary. I strongly urge you to join the facebook page for people with paralyzed diaphragms. There are over 1100 people on it now who have paralyzed diaphragms and hundreds who have had the plication surgery you had where the surgeons sew pleats to hold the paralyzed diaphragm down. The knowledge these people have based on first hand experience and their own research is amazing. They are so supportive and answer any and all questions. Most doctors don't know much about paralyzed diaphragms, and a universal complaint is surgeons don't tell you anything about how to recover from plication surgery. People on the facebook group can help you through it. I thought facebook was a waste of time but joined it just to join this group. It was a really smart decision for me. Did they cut your chest open or use robots and minimally invasive techniques? The method of the operation will greatly determine your recovery. I hope your recovery will go well. Best wishes!

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The surgeon went in the left side of my chest with a robotic instruments and lifted my paralyzed left side of my diaphragm off my left lung and flopped it down and sewed across so it wouldn't move ! I got along fairly well that way and all the sudden my breathing became very labored and still is to this day !
Thanks for telling me that sometimes the paralyzed diapharagm comes unstitched !
I have an appointment with a thoratcic surgeon soon and I will mention this to him !

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@machak

I can say that the conductivity testing for the phrenic nerve that I had done at Mayo was a simple and mostly comfortable procedure. I deal with "recurring right hemi diaphragm paralysis" and they did the test to see if the nerve itself was intact and operating appropriately (It was for me, so the problem for me is the muscle, not the nerve).

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I have right phrenic nerve palsy for a unknown reason. I started on Wegovy for weight loss in 2022. Wondering if that could be the cause of my issue? Do you know the cause of your Palsy?

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Hi JR, sorry to hear you are dealing with this! I am afraid I am not familiar with Wegovy. In my situation, the closest answer I have is a theory from Mayo that my autoimmune/auto inflammatory illness attacks the phrenic nerve causing the paresis. My disease hits other nerves too, but his is the one that causes the most obvious drastic symptom. In my case, what I have learned is when the body starts attacking itself there are amazingly strange and unpleasant things that can happen. I will try to do a little research on wegovy. Best wishes!

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@machak

Hi JR, sorry to hear you are dealing with this! I am afraid I am not familiar with Wegovy. In my situation, the closest answer I have is a theory from Mayo that my autoimmune/auto inflammatory illness attacks the phrenic nerve causing the paresis. My disease hits other nerves too, but his is the one that causes the most obvious drastic symptom. In my case, what I have learned is when the body starts attacking itself there are amazingly strange and unpleasant things that can happen. I will try to do a little research on wegovy. Best wishes!

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Thank you!

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