Paralyzed Diaphragm

My Rt phrenic nerve is dead therefore my rt diaphragm is paralyzed. I had a Rt diaphragm plication. I was coughing 24 hours a day before the surgery. When it happened I thought I had the worse asthma attack ever. That was when the lung collapsed from the diaphragm. Had to sit straight up to breathe at all. When I lay down my oxygen levels drop. When I sleep I use a bipap with oxygen pumped into it. I don’t have to have when I am up. I do have some shortness of breath when I move always. You need a cardio/thoracic surgeon to do the surgery.

June 9 2023 had a mechanical valve along with aeortic valves replaced with plastic tubes with mesh (dont understand that). 1 week later discharged and doing good 4 days later could not breathe 850 cc of fluid on the heart. Was successfully drained. Discharged from hospital 4 days later, but not I seem to be short of breath, sleep with air at night. I'm supposed to walk 4 to 5 times a day but my lung capacity is not there yet. I have a gut 44 inch waist skinny everywhere else so can somebody tell me about the symptoms to look out for on a bad or damaged diaphragm.

Surgery on or around the heart can result in a left diaphragmatic paralysis, depending on if the nerve, the left Phrenic nerve has been compromised in someway. Sometimes it comes back within a few weeks. Sometimes it doesn’t come back at all. A fluoroscopy would determine this for you.

I am unable to find that particular TedTalk. Can you provide a link?
Thank you.

I have a paralyzed diaphragm — three years now. I can still bicycle almost as well as before, but I can barely swim. My biggest problem is that I can’t sleep. I always have to be on my left (good) side. I wake up after four hours, max. Any suggestions on sleeping strategies, mattresses or devices? Thanks.

With my PD my pulmonologist recommended raising the top of my bed. I didn't want to get a wedge pillow with a steep slope, which many people with PDs use, because I thought it would hurt my neck or back. I got a 7" foam mattress riser from Avana that I actually put on top of my mattress and cover with a 2" foam mattress topper. The Avana riser raises the top of my bed 7 inches and tapers with a gentle slope to the foot of the bed and doesn't hurt my neck or back. Have you had a sleep study test to see if you have sleep apnea? Many people with PDs do have it; and their sleep has been dramatically improved by using a bipap machine, with or without oxygen. My sleep apnea was diagnosed before my PD was, and my CPAP continues to be all I need to get a good night's sleep. There doesn't seem to be a consensus among the people on the facebook page for people with paralyzed diaphragms on optimum positions, ie stomach, back, PD side, nonPD side. Many people with PDs have bought adjustable beds, which have helped them immensely. I bought my Avana riser from the company website, but you can find them elsewhere. Good luck! https://www.avanacomfort.com/mattress-elevator.html

Thanks so much for your reply. I will look into the Avana riser and also see if I can get into a sleep study.
I am glad to hear you are sleeping well.

Hi, this is my first time posting, and not sure I'm doing it correctly. I have a paralyzed left diaphragm, was scheduled for diaphragm plication surgery, and recently found out about phernic nerve renerbation surgery done by Dr. Matthew Kaufman in New JErsey. As far as I can tell, there are only two treatment centers on the USA who offere this: Dr. Kaufman's New Jersey clinic & UCLA. Unfortunately, my health insurance is tied to state affordable care act & will probably not pay for out-of state & out-of-network surgery. Has anyone on this site tried to travel to one of those locations & how did it go with your insurance?
Alternatively, does anyone know of any surgeon at Mayo Clinic or in state of MN offering this surgery? Thanks for any leads!

Hi @lululinden, Welcome to Connect. There is another discussion on the different treatment options that might be helpful to get your questions answered.
--- Treatment Options for Paralyzed Diaphragm: https://connect.mayoclinic.org/discussion/treatment-options-for-paralyzed-diaphragm/

Thanks @johnbishop! I had watched that video already, but appreciate the heads up. Trying to find out if anyone in MN does this surgery....