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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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sumimasn | @sumimasn | Apr 7, 2019

Hi there, does anyone know of a surgeon who can repair in the Toronto area? I was diagnosed with a paralyzed diaphragm and Im desperate to aggressively have it repaired if possible Thanks so much and best to each of you who have the same problem as me.

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1 reply
ladylawdawg | @ladylawdawg | Mar 17, 2019

Greetings, I am new to this group. I survived a ruptured appendix for three days and then pneumonia and sepsis in October 2014. January 2015, I was still lacking energy and no longer able to go up a set of stairs w/o having to stop. Long story short, 48% lung function. I live at a high elevation. Went on vacation at the shore. Within days, the head aches lessened, my energy level improved, nose bleeds stopped and the fog lifted. I am now determined to relocate to sea level. I am also going to look into Dr. Kauffman. Those familiar with his work, ANY idea what he charges? I know all surgeries are different, but a ballpark...... Thanks for reading. Looking forward to learning and meeting others with phrenic nerve damage.

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lyn22 | @lyn22 | Mar 6, 2019
In reply to @alison2 "Hi everyone I am also going through this but my injury was due to an ablation..." + (show)
@alison2

Hi everyone I am also going through this but my injury was due to an ablation and the doctor hit the phrenic nerve. there is a doctor in New Jersey who is doing a surgery to repair the nerve I’m not sure if you Google the phrenic nerve and New Jersey doctor it will come up. There is also a surgery where they can staple your diaphragm down but it’s very invasive. I have been told I need to wait at least a year to see if it is permanent, that normally it goes away within a year. crossing my fingers!!

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Happened to me feb 4 2019. They keep saying it will heal, first 2 days - to 1 month. Now they are saying 2 months. Fingers crossed as I have a hard time breathing and need oxygen to walk. Hope you have healed and did not need the year?

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carolannz | @carolannz | Feb 6, 2019
In reply to @allisonsnow "@shilo14 You mentioned in your post you had a portable concentrater...do you also have the large..." + (show)
@allisonsnow

@shilo14 You mentioned in your post you had a portable concentrater...do you also have the large machine you use in the house? I use tanks because my oxygen company said I couldn't have both concentraters. WHO said I am not sure...insurance co...medicare
I am not sure they are accurate. Travel would be so much easier with a poc !!! Even just to go to Mayo. My husband is very hesitant to travel anywhere using the tanks and/or hauling the big machine so we go no where.

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There is no reason to not travel by car with the tanks or even the big machine. I keep a spare tank in the car just in case I stay longer. Try not to put too many restrictions on yourself as we have enough already.

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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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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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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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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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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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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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