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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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usmccam | @usmccam | Jan 17, 2019
In reply to @colleenyoung "Welcome to Connect, @jgreg1954 I'm tagging @allisonsnow who also has experience with phrenic nerve issues, not..." + (show)
@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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Merry, Alumni Mentor | @merpreb | Jan 18, 2019

@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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mistekat | @mistekat | Jan 18, 2019

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 18, 2019
In reply to @mistekat "I had open heart 21 years ago. A cough started after that. I spent 10 years..." + (show)
@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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anotherfinemass | @anotherfinemass | Jan 18, 2019
In reply to @shilo14 "I also had my right phrenic nerve sacrificed during my surgery for squamous cell thymic carcinoma...." + (show)
@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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christy26 | @christy26 | Jan 26, 2019

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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jesse4600 | @jesse4600 | Jan 31, 2019

Look up Dr. Kaufman in New Jersey. My Brother in law had shoulder surgery and his was damaged, and he was only breathing on one lung for 3 years after his phernic nerve was damaged. He was told there wasn’t anything they could do, but just hope it comes back. We found Dr. Kaufman and he takes a nerve out of your ankle and places it in place of the damaged nerve in the neck, now my brother in law is heeling fast and is breathing with both lungs.

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jesse4600 | @jesse4600 | Jan 31, 2019
In reply to @giller198 "I was diagnosed with a paralyzed right diaphragm back in January. I also have shortness of..." + (show)
@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?

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Look up Dr. Kaufman, he is a god sent on fixing the Phoenix nerve. He fixed my Brother in laws, he finds the bad section of the nerve and he takes a nerve from your ankle and places it in place of the damaged nerve in the neck. My brother in law is breathing with both lungs

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giller198 | @giller198 | Feb 4, 2019
In reply to @jenniferhunter "@giller198 I hope you feel better soon. Fascial work is amazing. Have them show you how..." + (show)
@jenniferhunter

@giller198 I hope you feel better soon. Fascial work is amazing. Have them show you how you can do some of it at home so you can progress faster.

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Jennifer, been doing the Bowen technique about two months now and haven't really noticed any change. I don't believe we have anyone in the town I live that is certified on Facial. Still swimming though and doing as much exercise as I can.

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