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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I developed painful hand-foot syndrome during chemo (Taxotere). A year later, the skin has healed up, but still having residual tingling in hands & feet. Wondering if it will ever go away.

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@shilo14

I also had my right phrenic nerve sacrificed during my surgery for squamous cell thymic carcinoma. My invasive tumor was involved with both phrenic nerves, and as my surgeon tried to free the right nerve it was damaged; he opted to not attempt to disentangle the left phrenic nerve to avoid putting me on a ventilator for life. I was told the damaged nerve can regenerate at one mm per month. My surgery was six years ago and while my nerve never regenerated, I have regained some breathing ability through my body adapting.
I now have very well developed neck muscles and was told I also breathe with y newly developed muscles in my intercostal spaces (between my ribs). I tried some specialized breathing PT, but didn't see any benefits. I have progressed from needing 3 liters of oxygen 24 hours a day, to just using O2 at night for sleeping, as it is difficult to move air in the reclining position, to now just using a CPAP machine at night, which splints my right lung open so that the left lung can function more efficiently.
I haven't researched having a phrenic nerve transplant in several years, but when I did, it sounds like very difficult surgery and had a low success rate. I certainly have limitations due to my breathing issues, but I can live with them! I can't swim laps, or climb any hills, or exercise really hard - but I can hold my new granddaughter, I've attended two of my sons weddings, and life is good. I don't get the hiccups and when I shiver or laugh really hard I struggle to breathe, but I'm happy to be alive after initially being told I wouldn't survive.

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@shilo14 - What a great attitude you have! I particularly enjoyed thinking about you holding your granddaughter and attending your sons' weddings. When I read that if you laugh really hard you struggle to breathe; I can totally relate. The first time it happened to me, it actually occurred to me that I could literally laugh myself to death - which made me laugh just a little more thinking about it. But so far, at least for me, there hasn't been enough laughing to present a serious risk... but I'm keepin' my chin up. 😉

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@mistekat

I had open heart 21 years ago. A cough started after that. I spent 10 years with a pulmonologist who would not listen. I found another pulmonologist who informed me about phrenic nerve
The cough is invasive and intense. Many times a day. It hurts and causes concern in others. Have talked with bot Mayo and Cleveland Clinic. They want me to see a pulmonologist there. They can't help. Is there anyone who specializes in phrenic nerve?

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Welcome to @mistekat. I'm not sure I understand. Both Mayo Clinic and Cleveland Clinic recommended to see a pulmonologist at their respective clinics or suggested you see someone local to you? Can you explain further?

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I had open heart 21 years ago. A cough started after that. I spent 10 years with a pulmonologist who would not listen. I found another pulmonologist who informed me about phrenic nerve
The cough is invasive and intense. Many times a day. It hurts and causes concern in others. Have talked with bot Mayo and Cleveland Clinic. They want me to see a pulmonologist there. They can't help. Is there anyone who specializes in phrenic nerve?

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@usmccam- Welcome to Mayo Connect. I'm glad that you found us. I know that after both of my lobectomies it felt as if I'd never be able to breathe. It's scary as hell. I encourage you to read the posts on this site. Also, what does your doctor say about this?

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@colleenyoung

Welcome to Connect, @jgreg1954 I'm tagging @allisonsnow who also has experience with phrenic nerve issues, not from radiation but rather from a tumor.

JGreg, it must be scary to have your diaphragm paralyzed and decreasing lung capacity. Are there lung or breathing exercises that might help like those that people with lung conditions do?

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There is nothing scarier than when you cannot take in a breath or breathe. All the treatments and exercises in the world do not help when you cannot breathe The more you try to breathe, the more paralyzed you become. It is beyond scary.

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@merpreb

Hello- I'd like to introduce @tboyd03. She is having problems and hopefully some of you might be able to help direct her in the right direction and offer some help!

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May I ask what kind of problems? Has it been confirmed a phrenic nerve?

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Hello- I'd like to introduce @tboyd03. She is having problems and hopefully some of you might be able to help direct her in the right direction and offer some help!

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Wishing everyone a Merry Christmas and a good New Year, take care

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