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?

Interested in more discussions like this? Go to the Lung Health Support Group.

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?

REPLY
@colleenyoung

How is your daughter doing, @dina2474? Has she worked with a speech therapist to help with the recovery of her voice?

Jump to this post

Not yet. She hasn’t had enough nausea and pain free days to see a therapist.

REPLY
@dina2474

My daughter had the same surgery and lost her voice. It has come back some but we are still waiting. She has also had abdominal pain and nausea since the surgery. All tests and labs are normal. Did you have any persistent abdominal pain after your pneumonectomy?

Jump to this post

How is your daughter doing, @dina2474? Has she worked with a speech therapist to help with the recovery of her voice?

REPLY
@sonshine161

My doctor said it was my recurrent nerve which ties into the Vagus nerve.

Jump to this post

My daughter had the same surgery and lost her voice. It has come back some but we are still waiting. She has also had abdominal pain and nausea since the surgery. All tests and labs are normal. Did you have any persistent abdominal pain after your pneumonectomy?

REPLY

@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/

REPLY
@giller198

I was diagnosed with a paralyzed right diaphragm back in January. I also have shortness of breath especially when I swim. I had open heart surgery back in September of 2016 and my heart doctor has ruled out phrenic nerve damage because of the time between the heart surgery and when this started. The doctors think I injured the diaphragm somehow and if I did I never had any pain or any other symptom. Has anyone read or had a surgical procedure that can be done to pull the diaphragm away from the lung?

Jump to this post

yes in Nov 2018 brain decompromission , and now in June 2023, I have left side paralyzed diaphragm and I am in the hospital constantly without prednisone I can't breath it is horrible. Doctors want to tack the diagram but I want someone to look at the nerve and put the device in. Not sure why so many doctors are scared of this procedure. This is a horrible quality of life in my case.

REPLY
@vic83

Thanks for the info ...that helps

Jump to this post

My doctor said it was my recurrent nerve which ties into the Vagus nerve.

REPLY
@sonshine161

I think he told me after. My voice was hoarse and i couldn’t get more than three or four words out without stopping to take a breath. It was weak. I spoke to a voice and swallowing clinic at Oregon Health and Science where i live. They offered me different temporary treatments which didn’t last more than several days. I opted to have an implant but my voice started to get better a month before the surgery. At first i couldn’t tell the difference but more and more friends told me my voice was getting better. It’s pretty much normal now. I know what you’re going through, it’s awful.

Jump to this post

Thanks for the info ...that helps

REPLY
@sonshine161

I think he told me after. My voice was hoarse and i couldn’t get more than three or four words out without stopping to take a breath. It was weak. I spoke to a voice and swallowing clinic at Oregon Health and Science where i live. They offered me different temporary treatments which didn’t last more than several days. I opted to have an implant but my voice started to get better a month before the surgery. At first i couldn’t tell the difference but more and more friends told me my voice was getting better. It’s pretty much normal now. I know what you’re going through, it’s awful.

Jump to this post

It took about four or five months to get better and I’ve heard some have to wait a year.

REPLY
@vic83

Thanks for your prompt reply. Did your surgeon tell you up front or after?
Was it as I describe? I can only whisper in measured words. But my throat is not sore. I am not talking much but it is not getting better.
Living without a voice can be a real handicap. I am happy you got yours back. Is it normal?

Jump to this post

I think he told me after. My voice was hoarse and i couldn’t get more than three or four words out without stopping to take a breath. It was weak. I spoke to a voice and swallowing clinic at Oregon Health and Science where i live. They offered me different temporary treatments which didn’t last more than several days. I opted to have an implant but my voice started to get better a month before the surgery. At first i couldn’t tell the difference but more and more friends told me my voice was getting better. It’s pretty much normal now. I know what you’re going through, it’s awful.

REPLY
Please sign in or register to post a reply.