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

Theres another person here with that issue but I can’t remember her handle. I would put “sniff” in the search bar

What is plication surgery?

9 weeks ago I had 1/3 of my top right lung removed because of a spot on my lung. After surgery I was having a lot of trouble breathing. The doctor did a sniff test and found that my right diaphragm was not functioning. The doctor would do nothing and said I would have to wait 6 months and see if the diaphragm would start working on it’s own. Well I’m really struggling with this. Medicare won’t pay for me to have oxygen because my oxygen level has to be under 89% before they will give me a tank. I’m trying to do all the things that will supposedly help me but I still struggle for breath. Any suggestions on how I can help my situation?

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.

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

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.

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

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.

Thanks for the advice.

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.