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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@nla4625

Neurologists do an EMG test to test the viability of the phrenic nerve. .https://www.mayoclinic.org/tests-procedures/emg/about/pac-20393913 People generally have to go to a larger medical facility to have this done; but if you're in the Mayo System, you shouldn't have any problem finding a doctor to do it. Which Mayo facility to you go to? I've read about excellent thoracic surgeons who deal with diaphragm issues in Rochester, Florida and Arizona and could pass their names on if you tell me where you are. There is an excellent facebook group for people with paralyzed diaphragms if you're ever interested in connecting with around 1400 people who know exactly what you're going through.

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Thanks for the advice.

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@janja1949

Both sides of my diaphragm are immobilized since my ablation. Every day is different. I had a lumpectomy with sentinel node dissection. I’m tired most of the time. I had Respiratory PT. I’ve been told it would not get any better.

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I'm so sorry you're dealing with this. Having both halves of your diaphragm paralyzed is even more rare than having the right or left half paralyzed. The only strategies I've read about for this condition are training other muscles to help you breathe, which I assume your respiratory therapist helped you with, and having pacemakers put on your hemidiaphragms. The leading expert for diaphragm pacing in the country is Dr. Onders at University Hospital in Cleveland; but I think other doctors are now doing this. The fatigue from not being able to breathe properly is terrible. One of the things that helps me every day is pursed lip breathing, which mimics breathing in and out through a straw.

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Thank you for your kind words. I have hope for the future. My O2 sats and heart rate are normal.

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@studnicka50

I am going to ask my doctor to order the sniff test . Thank you for the suggestion .
I have a left elevated Diaphram
Trouble breathing
My left Diaphram moves to my back and I have to move it forward manually and “ pull it up “
I think I need surgery cause this is a nerve damage problem that has slowly progressed over two years s a result from a complication / injury in a surgery I had .

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There is a fb page “ paralyzed diaphragm “ that has others that have had or do have this problem, including myself. I am scheduled for a surgery called “ plication surgery “ at the Cleveland Clinic which will not correct the phrenic nerve but will partially restore my breathing. There are other options as well which others will gladly share. Best wishes to you.

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My husband has bilateral diaphragm paralysis. He has been with this for 5 years and counting.

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@jeffreylwahl

There is a fb page “ paralyzed diaphragm “ that has others that have had or do have this problem, including myself. I am scheduled for a surgery called “ plication surgery “ at the Cleveland Clinic which will not correct the phrenic nerve but will partially restore my breathing. There are other options as well which others will gladly share. Best wishes to you.

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I was diagnosed with paralyzed left hemi-diaphragm a few months ago. But it is likely something I've had for a very long time and been able to compensate enough until recent other health issues made it harder for me to breathe. (Long story)

It didn't take long for me to feel good about plication surgery. Recent studies/analyses point to secondary health risks such as strain on heart, etc. that I'm pretty sure have been impacting my life for years. Plication surgery is an especially good option now that robotic techniques are more common. But even the VATS minimally invasive plication surgery is safer and more effective than older "open" plication techniques.

Can you share with us other options you think are worth considering? And is there a reason you are choosing Cleveland Clinic (which is definitely a top tier medical facility)? I've been looking at the University of Utah which appears to be working on becoming a top tier robotic plication surgical center.

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