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giller198
@giller198

Posts: 29
Joined: May 15, 2018

Paralyzed Diaphragm

Posted by @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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REPLY

@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?

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Lisa, the procedure is called diaphragmatic plication

@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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@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?

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

@allisonsnow

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

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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.

@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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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

@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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Allison, here's some information about the MyBreath app https://www.breathresearch.com/mybreath/
I believe it is only available for Apple app store. Research with this app is being done in collaboration with Dr. Johnson from Mayo Clinic.

There are several similar apps on Google Play, too. Which app are you using from the Google play store, @giller198?

@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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yes I don't have apple …..have android/google play store

@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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@colleenyoung I got looking back at all the posts and I saw diaphragmatic breathing is this different from breathing from your diaphragm as singers do? and as I mentioned here somewhere my diaphragm is paralyzed (right) also phrenic nerve

@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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Dr Amit Sood has written several books about 'Mindfulness' & 'Resiliency' – HAPPINESS is my favorite and I believe his third book.
I was in a 2008 'paced breathing research study' with Dr Amit Sood. I had just lost most of my left lung to lung cancer. I was at the brink of life as I could not breathe. I moved heal toe, heal toe, across our living room, and had great difficulty on stairs.
When I received the work book "Attention Interpretation Therapy' with a Paced Breathing DVD. The assignment was to practice breathing with the DVD 15 minutes, a minimum three times a day. I practiced 4 hours in the morning, 4 hours afternoon and 4 hour during the night.

The once a week follow up phone call from a wonderful nurse in oncology helped me sort out hope and continue the study. It all began to work when it feel like I woke up my diaphragm, relax my my nervous system and re-train my brain to live one day at a time. This was all with the guidance of the DVD and practice, practice, practice. I now run with this downloaded on my iPhone.

Honestly, when you are hit with the cancer diagnosis, especially when it is the #1 Cancer Killer – Lung Cancer…it is very difficult to grasp
Mentally, Physically and Emotionally.

Dr Sood now gives helpful information daily on Twitter. He has also given a great TED X Talk. You can You Tube Dr Amit Sood and watch two of his talks. My journey with lung cancer has changed my life, lung cancer became my blessing. I no longer live in desperation. I have learned to live day to day and when I wake up each morning I am grateful…too five or more people daily, before I get out of bed! This all has continued to help me breathe and enjoy life. When life gets crazy I remind my brain to do things that are most positive and take a deep breath.

I truly hope this helps. All my best,

@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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I'm using The Breathing App from the Google play store. If you download the app then open it, the lower right hand corner is a circle with an " i ", tap on it and it brings up a menu for setting up and other features.

I also found some info on diaphragmatic breathing exercises from the Cleveland Clinic. The link is my.clevelandclinic.org/health/articles/9445-diaphragmatic-breathing. Hope I got that right. I found this just by Googling diaphragmatic breathing exercises. Hope this will help.

John

@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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There are also some great resources about Mindful Breathing right here on Connect.

See the Health & Mindfulness Page https://connect.mayoclinic.org/page/mindfulness-in-health/
Here you can read about Dr. Benzo, Mayo Clinic and his work in mindfulness and breathing. The page includes 10 blogs of mindfulness exercises as well as video and audio files for guided practice.

@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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Thank you Colleen, I will look into this along with Dr Sood and the tedtalks

My daughter has been in ICU for 6 weeks on a ventilator. She has been unable to breathe on her own for more than a couple hours. She tested positive for the West Nile Virus & has a paralyzed right diaphragm as a result of the virus. Do the breathing exercises mentioned in this discussion reverse the paralysis? Where can I get more information on this?

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@charlene22

My daughter has been in ICU for 6 weeks on a ventilator. She has been unable to breathe on her own for more than a couple hours. She tested positive for the West Nile Virus & has a paralyzed right diaphragm as a result of the virus. Do the breathing exercises mentioned in this discussion reverse the paralysis? Where can I get more information on this?

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@charlene22
Just wanted to tell you how sorry I am about your daughter.
I hope she will recover soon.
Ronnie (GRANDMAr)

@charlene22

My daughter has been in ICU for 6 weeks on a ventilator. She has been unable to breathe on her own for more than a couple hours. She tested positive for the West Nile Virus & has a paralyzed right diaphragm as a result of the virus. Do the breathing exercises mentioned in this discussion reverse the paralysis? Where can I get more information on this?

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I also have a paralyzed right diaphragm and non of my doctors have come up with a medical reason for it, so I have been dealing with. Some of the fixes that are available the doctors are saying I'm not in bad enough condition, being on oxygen, not being able to walk.I have been doing breathing exercises for about 4 months now and it seems to help. I do a spirometer one day, paced breathing the next day and diaphragmatic breathing next and then I start over again. I'm still swimming and I can go a little bit further that 6 months ago. I hope your daughter recovers. Thank you for the input, John

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