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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@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

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Thank you, glad to have found this group.

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@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

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@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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@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

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@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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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.

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@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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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 ☹️.

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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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@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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@alison2

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

Teresa

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His name is Dr. Matthew Kaufman

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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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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.

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