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

The three main ways to treat paralyzed diaphragms are plication, nerve graft, and diaphragm pacing. I don't know anything about the center at the University of Utah doing plications, which is why I would go to a center like the Diaphragm Center at Columbia Medical Center in NY, the Cleveland Clinic or the Mayo Clinic, where doctors have decades of experience doing successful plication surgeries. The Utah Center says it has 100% success rate. What does that even mean? No one died? I know there are dozens of qualified skilled thoracic surgeons around the country doing plications, and I'm sure some of them are at the University of Utah. If I had the option, though, I would go to one of the three places listed above.

As I'm sure you know, there are two main ways plication surgeries are done: a full thoracotomy where the surgeon opens your chest cavity or minimally invasive VATs surgery with robots. I asked my prospective thoracic surgeon who diagnosed my PD and specializes in minimally invasive thoracic surgery if he could guarantee he would do my plication using minimally invasive techniques, and he said he could not. He would decide once he started the operation how he would proceed depending on how well he could see. Scar tissue seems to be a big issue impacting plication surgeries. I only mention this because I think patients who want plication surgery assume they can have it done with minimally invasive techniques, where this might not be the case. It is definitely something to ask your thoracic surgeon about. Best wishes as you figure out your next steps!

I really recommend you join the facebook page for people with paralyzed diaphragms. Fortunately I don't need supplemental oxygen with my left paralyzed diaphragm, but many of the people in that group do. They would share their tips on how they cope with breathing and dealing with Medicare and the insurance companies to get the oxygen supplies they desperately need. Most doctors don't know much about this rare condition, and I've learned so much about it and gotten amazing support from people there. Best wishes!

I have a friend who uses a portable oxygen concentrator to increase oxygen. It uses the air in the room, removes hydrogen, and provides concentrated oxygen to breathe.

She has a different reason for using it, and right now is only using it while on an elliptical exercise machine. Not sure if Medicare will pay for it, but it’s probably less expensive for them to pay for. Her husband is a retired general surgeon and would not have her using it if it didn’t work.
https://my.clevelandclinic.org/health/treatments/25183-oxygen-concentrators

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.