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giller198
@giller198

Posts: 26
Joined: May 15, 2018

Paralyzed Diaphragm

Posted by @giller198, Tue, Jul 3 10:57pm

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.

REPLY

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?

@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?

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My biggest challenge would be able to swim like I use to. I'm a member of US Masters Swimming and the National Senior Games. The most I can swim now is fifty yards then I have to stop and catch my breath. I can ride my bike and walk the dog around the hills where I live with know problems. Just swimming is where I suffer. You have my okay to connect me with these other members. If have have more information for the doctors it may help. The first doctor I saw I'm thinking never had this condition before him. Thank you, keep in touch

@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

I commend you for your successes. I would like to ask you to watch Dr Amit Sood's TED X Talk. It has been my personal experience where I 'retrained my brain' and 'retrained my breathing'. It takes practice, but I have a feeling that you can learn how to breath with you diaphragm while you continue to go the distance with paced breathing. Dr Amit Sood has also written several books, one of my favorite is "Happiness". There is a mind body connection that you can apply to breathing. I never ran before lung cancer surgery…but now I run about 2 10k races a month…because Paced Breathing has become my guide. Keep us posted on connect, ok

@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

Thank you for the information on paced breathing. I will definitely look into this. This sounds hopeful, the best news I've heard. I need to mention this to my pulmonary doctor.

@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

I downloaded an app for that paced breathing. I've been using it but I don't think enough. This Dr. Sood, he's kind of a inspirational speaker, am I correct?

@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

Hi @giller198,
Here is some biographical information about Dr. Amit Sood, Mayo Clinic internist: https://www.mayoclinic.org/biographies/sood-amit-m-d/bio-20054879

@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

Lisa, How do I ask the other members of the group a question without writing them individually? The question I have is about diaphragmatic breathing?

Liked by grandmaR

@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

@giller198 simply post as you just did now. All messages go to all members participating in this discussion and following the group.

@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

@giller198
Hi!
I don't know the question, but I am familiar with diaphragmatic breathing.
I was in therapy and my doc recommended it.
At first I wasn't sure it really worked, but as I got into it, it amazed me.
I've used it for times that are difficult for me (ie surgeries).
It kept my breathing even, my blood pressure down and my mind clear.
It is something you need to practice to get used to it.
Hope this helps….
Ronnie (GRANDMAr)

@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

Hello Grandmar, I've only been doing this breathing for a few days now and at times it seems it is working. Maybe it will help me while I swim. The therapist wants me to keep doing it until I see her again in two weeks. Thank you for your input.

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.

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?

@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

@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

@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.

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