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

Yes it is a diaphragm plication. You need a cardio/thoracic surgeon to do the surgery. I had it done 2 times. The first time was arthroscopic. I got pneumonia and coughed so hard I broke the sutures. So I had the big surgery the second time.

Your post caught my curiosity. I have suspected for a very long time that I may have some sort of undiagnosed "nerve autoimmune" condition. or the last 20 years or so, to the present time, I have experienced 3 episodes of "shingles without the rash" which was so painful that it took me to the ER. Both went undiagnosed at those times, and resolved on their own (although the neuropathy was VERY painful...).
Not, I have a paralyzed phrenic nerve with no known etiology.
Can you share what kind of condition you were dianosed with?? I am also seeing an Immunologist that specializes in autoimmune diseases; however, no diagnosis yet. Thanks in advance.

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My symptoms (shortness of breath) began about a year ago. I was snorkeling in the warm waters of the Caribbean, lost my breath completely, and had to be rescued. Very scary. I immediately saw a Pulmonologist in NJ, and he did some tests, including a Sniff Test, and a CT of the Cervical region of the spine. Sniff Test was positive. He referred me to Dr. Kaufman in New Jersey; he also performs surgery at Cedars-Sinai in Los Angeles, CA. He apparently ONLY does this surgery, using his own developed technique. I am 77 years old, in good health, but I was rejected because his protocol only accepts patients less than 67 years old. Apparently, the success rate decreases with age. I then became my own advocate and sought information on this condition. I found Dr. Mar Ginsburg at Columbia-Presbyterian Hospital in New York City, who specializes in this kind of surgery (plication). I also contacted the Mayo Clinic in Rochester, MN. Both concurred with wait-and-see to determine if the nerve will/can repair itself. I just saw my medical Pulmonologist this week, and, since it has been 6 months since my first Sniff Test, he is repeating it. Conclusion: we are still on the proverbial fence with only 60% of lung function.

A paralyzed or weakened diaphragm can be a symptom of a neuromuscular disease or some other disease. Thus, it's important to rule out possible underlying root causes of your diaphragm problems before you or your doctors just decide you have a paralyzed diaphragm with an unknown origin and resort to surgery. Since you mentioned the impact on your muscles, I really recommend you see a doctor who knows about ALS and other neuromuscular diseases. I'm confident my paralyzed diaphragm is not a symptom of something else and have a whole list of things that could have caused it: accidents, vaccinations, viruses, x-rays, etc. I hope you will keep us posted...best wishes!

I have issues in my diphragms from complications from a lung surgery a number of years ago. Can anyone suggest a doctor in the Washington DC area that specializes in diseases of the diaphragm? I have had trouble finding a pulmonologist or thoracic surgeon that can really address my issues. Mine are not paralyzed yet, just partially functional. Thanks.

I have also been diagnosed with a paralyzed diaphragm. I had a positive Sniff Test which clearly shows the frozen diaphragm. It has no known cause. Mayo Clinic suggested "wait-and-see" and re-evaluate in 4 to 6 months. My lung capacity is currently at 60%.

Had cardiac ablation-heat or electrical impulse to burn pacemaker cells in atrium of heart.
Burned the phrenic nerve- paralyzed diaphragm etc
**I saw a pulmonologist
**I had lung function tests done
**I am doing breathing treatments 3x day and on another inhaled medication

I did not qualify for pulmonary rehabilitation because my oxygen saturation was 1 point higher than insurance coverage

You have to be your own advocate if you want to breathe. Be kind but relentless. It took 2 months to get in to see the lung guy. Hope this helps
**

Do you know which Drs you saw at Mayo? I am being seen in Rochester and I’m totally impressed with the thoroughness and advice I’ve received. I just can’t get clear information on how many Diaphragmatic Plication surgeries they preform and the success rate. My situation is different than some and involves the Gastroenterologist dept. ( also an impressive group).
Thank you
Toby77

Sometimes it can be inactivity that can cause the diaphragm to become inactive. I had this problem myself from heart failure 💔 problems and was at a place where they had an Austrian trained physiotherapist they had me see as I could not take deep breaths anymore. He worked on my diaphragm for 1 session over a year ago and it solved the problem even before I left the office! Perhaps if you find someone who can do diaphragm work it may help. I had never heard of this kind of deep tissue work before. Take care.

No. From what I see, the Mayo Clinic model is a Team of multi-disciplinary medical professionals that do the initial evaluation. It is a top-down concept so the identity of the actual surgeon is probably not known til you are accepted as a surgical candidate and are evaluated in-person at Mayo's facility.