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

I had a blood clot go thru my lungs and heart and paralyzed the left side of my diaphragm!
My breathing has become very labored and I'm on oxygen at home !
Now my breathing issues are starting to affect my heart !
I've been to many doctors and so far I haven't had any relief from my breathing problems !
Does anyone know of a doctor who can help me ?
I'm from Oklahoma !
Donald Goss

Thank you for your comment. It is very helpful. I have been seen and evaluated and they are just waiting for me to say yes to surgery. From what I read I am fortunate to have a clear diagnosis and plan and to have been able to be seen by Drs who care, understand and really listen.
Thanks again!!

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.

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.

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

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
**

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%.

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.

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!

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.