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

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?

The breathing therapy has not been addressed yet.

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?

I recently had lung surgery to remove a cancerous lobe. the cancer had not spread and they say they 'got it all'. However, I now have phrenic nerve damage and would like to hear from others. I am on oxygen because my diaphram is not moving on one side. It has been six months but the nerve is still not working and pulmonary says it probably will never come back. Any more positive takes on this?

Hi @pc2018
I just merged your post about phrenic nerve damage to this existing discussion about the same topic so that you can meet others like @jgreg1954 and @allisonsnow.

Hello@pc2018 and welcome to connect. Have you tried breathing exercises for this condition? I was in a Paced Breathing Research Study for 3 months as a result of lung cancer VATS surgery to remove an upper left lobe and a wedge from my lower left lobe. I understand well, the challenges of breathing.
It may be worth a try...Dr Amit Sood has some great techniques, but you must practice several times a day. for a minimum of 15 minutes each session. I was desperate to breathe again and the program not only helped be breath...I am now a runner as well as a 10 year lung cancer survivor.

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!!

His name is Dr. Matthew Kaufman

@alison2

How long has it been now, Alison? I will cross my fingers (and pray) on your behalf as well!

Teresa

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.