Paralyzed Diaphragm

From what I've learned from the 1200+ people on the facebook page for people with paralyzed diaphragms, doctors recommend waiting up to two years to see if the phrenic nerve will heal itself before recommending plication surgery. If he is interested in having a nerve graft by Dr. Kaufman in New Jersey or diaphragm pacing by Dr. Ordners at University Hospital in Cleveland, please check with their offices regarding the timing of these procedures, because I think the time after injury or whenever the diaphragm became paralyzed impacts whether or not he will be a candidate for those procedures. The phrenic nerves of some people on the facebook page did heal within two years (some longer) and their diaphragms started working again. Each case is different, but your doctor's recommendation to wait seems to be the standard.

Thank you!
He is tired all the time. He has no energy. He can’t do his normal daily tasks without being winded. His oxygen level is still good. We will look into grafting and pacing.

Did any of your doctors mention he might have sleep apnea and recommend getting an overnight sleep study done? If he isn't getting restful sleep at night because of sleep apnea, that will definitely lead to fatigue during the day. A lot of us with paralyzed diaphragms sleep better with CPAP, BIPAP, or vin machines with or without added oxygen. Just a thought.

Doctors have mentioned, but he doesn’t snore.
Do you think this might help even if he doesn’t snore???
Thanks!

I just did a quick google search on something like sleep apnea without snoring and the articles that popped up indicated it is possible. I really encourage you to pursue this. As a first step, he can do a simple overnight study at your home with a finger monitor. If the results indicate he has sleep apnea, he can follow up with an overnight study at a sleep center. There they identify specific issues and the type of machine (CPAP, BIPAP, or vin with or without oxygen) and prescription for that machine that will help him get restorative sleep. It's worth a shot!

Thank you!!!
I’m going to Google.
Now it’s just getting him to do it 😂😂
Thanks!!

When I had chronic fatigue syndrome, I felt like death warmed over. I would have done just about anything to feel better. Hopefully your husband will feel the same and do this simple home overnight finger monitor test to rule out sleep apnea as a possible cause of his fatigue or see if it is in fact contributing to it. ...in which case you can do something about it. Good luck!

My husband was also just diagnosed with PD on his right side in June, but his problem started in March. We just thought it was the flu, covid or something else. He finally went to our doctor who immediately thought it was his heart. So we went through all the heart tests and his heart is normal. After our doctor saw him struggling to breath when laying flat on his back, our doctor was shocked and ordered a sniff test. It was confirmed with that test and others. He's been cpap machine for years, they are suggesting a bipap to help him, we are waiting on insurance to see, he may need to do another sleep test for they them to pay..
Trying to see a Thoracic surgeon to see if this can be fixed but again its a wait. Long story, sorry, but waiting is hard and we are feeling the pain with you and your husband.

I had 1/3 of my lung removed and in April, 2024, when I came out of surgery my diaphragm was not working and had moved to the top of my lung. My doctor wants me to wait at least 6 months and see if it will come back. There is only about a 30% chance that it will come back on its own. Based on what I’ve read on FB there is a risk to this surgery. As of right now I don’t want to take that chance. I struggle with breathing 24/7 but with God’s grace I’m going to try and tough it through.