Phrenic Nerve damage and paralyzed diaphragm: Anyone else have this?
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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Thanks for the advice.
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.
Thank you for your kind words. I have hope for the future. My O2 sats and heart rate are normal.
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.
My husband has bilateral diaphragm paralysis. He has been with this for 5 years and counting.