Share this:
jgreg1954
@jgreg1954

Posts: 2
Joined: Nov 29, 2017

Phrenic Nerve damage

Posted by @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?

REPLY

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?

@pc2018

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?

Jump to this post

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

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!!

Jump to this post

@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.

@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!!

Jump to this post

It has only been three months but I also have heart issues so now I am considered handicapped. I can barely walk anywhere it has definitely put a damper on any level of activity I wish to have. I cross my fingers and hope within the next nine months that it returns to normal function. The ablation also doesn’t seem to have worked so I have no tolerance for any type of activity ☹️.

@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!!

Jump to this post

Good morning Alison,
At three months I was still extrememely breathless also. I had constant oxygen and even then struggled if I went out on the deck or tried to walk in the yard with my portable POC. Don't lose hope; it does get better.
My heart rate still gets extremely high as my heart struggles to help keep me oxygenated. I'm on extended release Metoprolol to lower my racing heartbeat.
I have very low blood pressure, so it is a balancing act as Metoprolol also lowers your blood pressure.

@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!!

Jump to this post

@alison2

I am sorry to hear that you are dealing with so many issues. The damper on your activity level has to be difficult. Was the ablation to deal with a rapid heart rate?

How are you dealing with these changes in your lifestyle?

Teresa

@shilo14

I am so glad that you shared many of your successes in your post. It sounds like it has not been an easy road but you have accomplished much in both your breathing and your acceptance of your situation.

I look forward to hearing from you again!

Teresa

Liked by shilo14

@hopeful33250

@shilo14

I am so glad that you shared many of your successes in your post. It sounds like it has not been an easy road but you have accomplished much in both your breathing and your acceptance of your situation.

I look forward to hearing from you again!

Teresa

Jump to this post

Thank you, glad to have found this group.

Please login or register to post a reply.