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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giller198 | @giller198 | Aug 2, 2018

Has anyone heard of or had a test done on the phrenic nerve to see if it works? I thought I saw something once about this. I'm having a hard time understanding how my right diaphragm can just quit working without something to cause it to quit.

REPLY
1 reply
Lisa Lucier | @lisalucier | Aug 3, 2018

Hi, @giller198 -- interesting question about the phrenic nerve and a potential test to see if it works properly.

I found this information in Clinical Update, one of Mayo Clinic's newsletters for medical professionals. https://mayocl.in/2OIMrn9 You'll note it makes reference to phrenic nerve studies.

I also thought that @windwalker and @johnbishop may have something to add to this discussion about your inexplicable diaphragm paralysis and possibilities for testing the phrenic nerve.

You mentioned the pulmonologists you saw talked about a surgical procedure that can be done but is not guaranteed. What procedure were they looking at, if you don't mind sharing?

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 3, 2018
In reply to @giller198 "Has anyone heard of or had a test done on the phrenic nerve to see if..." + (show)
@giller198

Has anyone heard of or had a test done on the phrenic nerve to see if it works? I thought I saw something once about this. I'm having a hard time understanding how my right diaphragm can just quit working without something to cause it to quit.

Jump to this post

Hi @giller198 -- I'm not sure I can add anything other than I did a search and found some information in the Wiley Online Library.

Phrenic nerve conduction study in normal subjects
-- https://onlinelibrary.wiley.com/doi/abs/10.1002/mus.880180311

John

REPLY
giller198 | @giller198 | Aug 8, 2018
In reply to @lisalucier "Hi, @giller198 -- interesting question about the phrenic nerve and a potential test to see if..." + (show)
@lisalucier

Hi, @giller198 -- interesting question about the phrenic nerve and a potential test to see if it works properly.

I found this information in Clinical Update, one of Mayo Clinic's newsletters for medical professionals. https://mayocl.in/2OIMrn9 You'll note it makes reference to phrenic nerve studies.

I also thought that @windwalker and @johnbishop may have something to add to this discussion about your inexplicable diaphragm paralysis and possibilities for testing the phrenic nerve.

You mentioned the pulmonologists you saw talked about a surgical procedure that can be done but is not guaranteed. What procedure were they looking at, if you don't mind sharing?

Jump to this post

Hi Lisa, It was a surgical procedure that pulls the diaphragm away from the lower lung. I will go online and get the name and get back with you. John

REPLY
giller198 | @giller198 | Aug 8, 2018
In reply to @lisalucier "Hi, @giller198 -- interesting question about the phrenic nerve and a potential test to see if..." + (show)
@lisalucier

Hi, @giller198 -- interesting question about the phrenic nerve and a potential test to see if it works properly.

I found this information in Clinical Update, one of Mayo Clinic's newsletters for medical professionals. https://mayocl.in/2OIMrn9 You'll note it makes reference to phrenic nerve studies.

I also thought that @windwalker and @johnbishop may have something to add to this discussion about your inexplicable diaphragm paralysis and possibilities for testing the phrenic nerve.

You mentioned the pulmonologists you saw talked about a surgical procedure that can be done but is not guaranteed. What procedure were they looking at, if you don't mind sharing?

Jump to this post

Lisa, Looked at a site from Cedars Sinia about this procedure and the outcome depends a lot on the physical condition of the patient. Works best for patients with just one diaphragm paralyzed (unilateral). I need to do some more research.

REPLY
1 reply
giller198 | @giller198 | Aug 9, 2018
In reply to @lisalucier "Hi, @giller198 -- interesting question about the phrenic nerve and a potential test to see if..." + (show)
@lisalucier

Hi, @giller198 -- interesting question about the phrenic nerve and a potential test to see if it works properly.

I found this information in Clinical Update, one of Mayo Clinic's newsletters for medical professionals. https://mayocl.in/2OIMrn9 You'll note it makes reference to phrenic nerve studies.

I also thought that @windwalker and @johnbishop may have something to add to this discussion about your inexplicable diaphragm paralysis and possibilities for testing the phrenic nerve.

You mentioned the pulmonologists you saw talked about a surgical procedure that can be done but is not guaranteed. What procedure were they looking at, if you don't mind sharing?

Jump to this post

Lisa, the procedure is called diaphragmatic plication

REPLY
allisonsnow | @allisonsnow | Aug 13, 2018
In reply to @lisalucier "Hi, @giller198. Thanks for sharing this diagnosis of a paralyzed right diaphragm, plus your background with..." + (show)
@lisalucier

Hi, @giller198. Thanks for sharing this diagnosis of a paralyzed right diaphragm, plus your background with heart valve surgery and what has been ruled out so far. I can understand your wanting to know how this might have happened, and I applaud your persistence in trying to figure this out.

I'd like to introduce you to @wsh66, who has talked about paralyzed diaphragm, and @jmmb has also talked about diphragmatic issues and may have some thoughts on your condition and on potential surgical repair. @jgreg1954 @allisonsnow @kariulrich @kdubois @hopeful33250 also may have insights for you.

@giller198 -- what would you say have been your biggest challenges thus far with this condition?

Jump to this post

@llwortman
Where did you learn to pace your breathing? Who taught you to retrain? I have a paralyzed phrenic nerve and diaghram and scaring from radiation. I now have about 30% use of my lungs and find myself very limited in what I can do. My pulmonary dr. had mentioned rehab but there was none within do-able distance...would this be the same thing?

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allisonsnow | @allisonsnow | Aug 13, 2018

@giller198
I have both the right phrenic nerve and diaphragm paralyzed does that make a difference

REPLY
1 reply
giller198 | @giller198 | Aug 13, 2018
In reply to @allisonsnow "@giller198 I have both the right phrenic nerve and diaphragm paralyzed does that make a difference" + (show)
@allisonsnow

@giller198
I have both the right phrenic nerve and diaphragm paralyzed does that make a difference

Jump to this post

Allison, As I mentioned this diaphragm operation was being done at Cedars-Sinai Hospital and you can get the information on there website. It did say the physical condition of the patient has a lot to do with the outcome. Is yours unilateral (one diaphragm) or bilateral (both sides)? Also it was mentioned on this chat group the Mayo Clinic has a procedure that can check the phrenic nerve.

REPLY
giller198 | @giller198 | Aug 13, 2018
In reply to @lisalucier "Hi, @giller198. Thanks for sharing this diagnosis of a paralyzed right diaphragm, plus your background with..." + (show)
@lisalucier

Hi, @giller198. Thanks for sharing this diagnosis of a paralyzed right diaphragm, plus your background with heart valve surgery and what has been ruled out so far. I can understand your wanting to know how this might have happened, and I applaud your persistence in trying to figure this out.

I'd like to introduce you to @wsh66, who has talked about paralyzed diaphragm, and @jmmb has also talked about diphragmatic issues and may have some thoughts on your condition and on potential surgical repair. @jgreg1954 @allisonsnow @kariulrich @kdubois @hopeful33250 also may have insights for you.

@giller198 -- what would you say have been your biggest challenges thus far with this condition?

Jump to this post

It was mentioned in this chat group. You can download an app from the Google play store for this and it comes with a link to a video that shows you how. Also I got some info from my physical therapist on diaphragmatic breathing. I would have to get with her on where she got it.
John

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