Phrenic Nerve damage and paralyzed diaphragm: Anyone else have this?

Posted by jgreg1954 @jgreg1954, Nov 28, 2017

Phrenic nerve on the right side was destroyed due to radiation for breast cancer. Diaphragm is now paralyzed & taking away lung capacity. Anyone else experience this?

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So you don’t have a known precipitating event?

I see my rheumatologist on the 4th. If I can get him to help me run this to ground, that would be great. My pulmonologist is like “you’ve had cancer surgery - this happens sometimes” so there’s no point running down that road. If we can explore this on grounds it could be RA maybe I can learn something.

My pulmonary function tests are good except for one value. But that is sitting still. If I lift anything or bend over or walk uphill, I am gasping. Since I don’t spend my day sitting perfectly still, I’m not sure why that’s the only PFT scenario they do.

It’s all so confusing.

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@nla4625

One of the things that has astounded me is how many people have paralyzed diaphragms as a result of nerve blocks being put in during surgical procedures. What happened to Do No Harm? (Since my diagnosis of left paralyzed diaphragm, I joined the Facebook Group for People with Paralyzed Diaphragms and have learned a lot from the now @ 1300 people on it.)

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Please know I am not challenging you - I’m just trying to assimilate what I am learning from you and assess what pieces might align with my scenario. I’m grateful for your insight.

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@pb50

So how did you get that diagnosis and given your extensive research, Is it likely that prednisone would provide relief if the root cause is paralyzed diaphragm?

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I thought I was having a heart attack with shortness of breath, fatigue, etc and went to a nearby ER. They admitted me to the hospital and did extensive tests to rule out heart attack, stroke., etc. Someone noticed on my chest x-ray that my left diaphragm was elevated and called in a thoracic surgeon. He ordered a pulmonary function test and SNIFF test (fluroscopy), which showed clearly my left diaphragm was paralyzed. The SNIFF test is the gold standard test to see if your diaphragm is paralyzed. Because paralyzed diaphragms are rare, it takes some people months and years to get a proper diagnosis, so I was REALLY lucky. I have no idea about the rest of your question. The only treatments for paralyzed diaphragms I've read about are plication surgery, diaphragm pacing, and nerve grafts. I do know that on my Pulmonary Function Tests to test how well my lungs are working, they spray something to see if it helps me breath more easily. Whatever that was didn't seem to make a difference for me.

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@nla4625

One of the things that has astounded me is how many people have paralyzed diaphragms as a result of nerve blocks being put in during surgical procedures. What happened to Do No Harm? (Since my diagnosis of left paralyzed diaphragm, I joined the Facebook Group for People with Paralyzed Diaphragms and have learned a lot from the now @ 1300 people on it.)

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So how did you get that diagnosis and given your extensive research, Is it likely that prednisone would provide relief if the root cause is paralyzed diaphragm?

REPLY

One of the things that has astounded me is how many people have paralyzed diaphragms as a result of nerve blocks being put in during surgical procedures. What happened to Do No Harm? (Since my diagnosis of left paralyzed diaphragm, I joined the Facebook Group for People with Paralyzed Diaphragms and have learned a lot from the now @ 1300 people on it.)

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@nla4625

It is really helpful when you have a specific event where your phrenic nerve or diaphragm was injured that resulted in a weakened or paralyzed left or right diaphragm or both. I'm glad your treatment is helping you and hope it will restore full function of your diaphragm. Paralyzed diaphragms can result from accidents, operations, viruses, vaccinations, etc...and most of us who have had the condition with no symptoms for decades will never know what caused ours, sigh. Most doctors recommend waiting up to two years after the recent onset of a Paralyzed Diaphragm before having any type of surgical procedure to see if the phrenic nerve will heal itself. It sounds as though your is...which is outstanding news!!!

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I don’t really have a treatment. Prednisone helped but that was transient since I can’t stay on it. I just don’t have any evidence it is phrenic nerve related. Happy to pursue that, but I’m betting their first counselas you suggest, will be “wait”.
I’m just opining that the logical root cause is likely some type of trauma related to the surgery.

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@pb50

I’m not rejecting that possibility by any means, but in the context of Occam’s Razor , I’m of opinion that my diaphragm issue is that it was bruised, banged, and/or nicked when my left lower Lobe was removed via an opening between two ribs. Camera and irrigation were inserted into two other other openings. So I think I have material inflammation. Which is evidenced by marked improvement when on prednisone.

Jump to this post

It is really helpful when you have a specific event where your phrenic nerve or diaphragm was injured that resulted in a weakened or paralyzed left or right diaphragm or both. I'm glad your treatment is helping you and hope it will restore full function of your diaphragm. Paralyzed diaphragms can result from accidents, operations, viruses, vaccinations, etc...and most of us who have had the condition with no symptoms for decades will never know what caused ours, sigh. Most doctors recommend waiting up to two years after the recent onset of a Paralyzed Diaphragm before having any type of surgical procedure to see if the phrenic nerve will heal itself. It sounds as though your is...which is outstanding news!!!

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@nla4625

I don't have any imperial data confirming this, but there seems to be a large rise in the number people who have weakened and/or paralyzed left or right diaphragms or both. I am NOT a conspiracy theorist or anti vaccination activist, but I think it has to do with the rise of both COVID and the vaccinations, both of which can seriously harm the phrenic nerve. People who are having symptoms like shortness of breath, fatigue, lack of stamina, etc. should consider having a SNIFF test (fluroscopy) to determine if they have a weakened or paralyzed diaphragm. Most doctors don't seem to know much about paralyzed diaphragms, so people need to advocate for themselves.

Jump to this post

I’m not rejecting that possibility by any means, but in the context of Occam’s Razor , I’m of opinion that my diaphragm issue is that it was bruised, banged, and/or nicked when my left lower Lobe was removed via an opening between two ribs. Camera and irrigation were inserted into two other other openings. So I think I have material inflammation. Which is evidenced by marked improvement when on prednisone.

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@pb50

Oh my goodness! That sounds so very scary and painful . ❤️‍🩹

I notice this thread is years old. How did it resolve? I’m aware that Phrenic nerve reconstruction to restore diaphragm function is
becoming increasingly utilized.

How is your daughter today?

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I don't have any imperial data confirming this, but there seems to be a large rise in the number people who have weakened and/or paralyzed left or right diaphragms or both. I am NOT a conspiracy theorist or anti vaccination activist, but I think it has to do with the rise of both COVID and the vaccinations, both of which can seriously harm the phrenic nerve. People who are having symptoms like shortness of breath, fatigue, lack of stamina, etc. should consider having a SNIFF test (fluroscopy) to determine if they have a weakened or paralyzed diaphragm. Most doctors don't seem to know much about paralyzed diaphragms, so people need to advocate for themselves.

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@jenniferhunter

@dondon1 Another patient shared this information about a surgeon, Dr. Kaufman, who does a nerve graft to replace a damaged phrenic nerve for a paralyzed diaphragm. Here is a link to his practice and a paper he authored. I don't have experience with this, but wanted to pass along the information.

https://www.advancedreconstruction.com/find-care/surgeons/matthew-kaufman-md-facs-physician

"Phrenic nerve paralysis and phrenic nerve reconstruction surgery "
https://pubmed.ncbi.nlm.nih.gov/36031309/

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Dr. Kaufman has an age limit of 67 for nerve graft patients, ie he won't consider you if you are older than this. I recently learned that he sometimes installs diaphram pacers when he does the grafts, which is pretty interesting.

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