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

I had a paralyzed diaphragm but no pulmonologist recognized that was why I was continually sliding downhill - coughing, no energy, short of breath with any exertion, weight loss. It wasn't until my Thoracic Surgeon, who I was seeing after being found a candidate for a lung transplant, recognized that my mild fibroids could NOT be causing such extreme symptoms. He offered the chance to either go for the double lung transplant or try the Diaphragm Plication procedure to stitch it back in place. Much less recovery time, and a good chance it could relieve my symptoms enough to buy me as many years as a transplant. I had the surgery 27 June of this year - robotically! - at UW-Madison. My internal organs had been crammed and pushed - my stomach had moved under my rib cage - no wonder I could not eat and lost weight. In the two months since surgery, I can say it has been a true life-changer! I can garden, do laundry, walk, - no more napping the afternoons away and no more eating half cup of food at a time. My husband says "I got my wife back!" -- after over one year of just thinking I had to face a transplant or die. There are several tests they can prescribe which can verify that is the problem - but it's so much less invasive and recovery time is so short. I had about 5 incisions and drain tubes for a few days, but I am very healthy otherwise so my story may be different from others. By the way, I turned 74 in the hospital!

Hello... I am new here. My son was diagnosed with Peripheral nerve sheath cancer two weeks ago. He has since had surgery and it was removed. His CT and Mri scans are clear. There are so many contradictory information. If I could ask for any information that would be awesome.

Welcome, @stellacammarano. You will find members talking about malignant peripheral nerve sheath tumors in this discussion found here:
- Malignant Peripheral Nerve Sheath Tumor https://connect.mayoclinic.org/discussion/malignant-peripheral-nerve-sheath-tumor/

Click the link and join the conversation.

Can you tell me who your doctor is?

Dr Dan McCarthy at UWMADISON

Can you tell me how or what your symptoms were because of the Phrenic nerve problem? I was told my diaphragm on one side doesn’t completely retract or contract.

Thank you! I was told there was nothing they could do for me. Maybe that's still true, but I can at least try!

Never give up. Be your own advocate. Will be praying for you!!

My phrenic nerve damage is the result of a pneumonectomy last week. My voice is hoarse and weak. After i recover from the surgery, I’ll explore ENTs and try and find someone who has experience in this area. I live in the Pacific NW but I’ll travel if i get a recommendation of a great doc somewhere.

Yes. My phrenic nerve on the right side died. So my diaphragm is paralyzed. I have asthma/Copd. I coughed literally non stop until my husband read about a Cardiac/Thoracic Surgeon who does a diaphragm plication. The first surgery was done with only small cuts and chest tubes. Unfortunately my husband got sick and I had pneumonia. Then I had the big surgery. I understand that they fold over and suture the diaphragm so it doesn’t move up quite so far compress
the lung. When I lay down my oxygen level drops. I am on oxygen ad a bipap at night. I had to have a pace maker put in also. Before the O2 and bipap for 6 months I 6 times died for Minute or 2. My husband did cpr and brought me back. The finally figured out that when my oxygen dropped while I was sleeping my heart was getting short circuited from that nerve which is part of the Vaso. system. Now that does not happen any more.

They don’t know why my nerve died.