Treatment Options for Paralyzed Diaphragm

@nla4625 Thanks for posting the video with Dr. Kauffman and I look forward to watching it as he discusses his nerve grafting for the phrenic nerve for other doctors. I learned about him here on Connect when other patients posted his name, and I have relayed that information to other patients from time to time who are seeking help in this area. I have learned a lot by watching surgical conference videos and it is very valuable information. I'm glad you shared this!

The left side of my diaphragm paralyzed after a blood clot went thru my lungs and heart ! I almost killed me !
I had surgery that flopped the left side of my diaphragm off my left lung and then stitched it back back and forth !
I didn't begin have breathing problems for quite awhile after the surgery, but now I'm really short of breath ! I can't do anything that I'm short of breath !
I have an appointment with a vascular thoracic surgeon in a couple of weeks !
I hope he has some answers for me !

Where did you have diaphragmatic Plication and was it robotic or conventional? I am facing surgery and I can’t find people who have had it done and where and who did it. I’d appreciate your input.
Thank you Toby77

The facebook group for people with paralyzed diaphragms has around 1100 members. I'd estimate that more than half of them have had plication surgery, either a full thoracotomy or VAT minimally invasive surgery with robots. Where do you live? Members of the group could recommend a thoracic surgeon near where you live if they know of any. The top expert in the country for plication surgery and diaphragm issues in general that people in the group highly recommend is Dr. Mark Ginsburg at the Diaphragm Center at Columbia Medical Center in NY. I had a video conference with him because I wasn't quite sure that what my local highly qualified thoracic surgeon was telling me was correct. If you join the group, you could ask for recommendations; AND people could answer any questions you might have. This is a rare occurrence, and most doctors don't know much about it...so to have a group with over 1100 people with different knowledge and experienced is an amazing resource. Anyway, if you don't want to do that, please look for a thoracic surgeon who specializes in minimally invasive surgery using robots at a major medical center or a medical center affiliated with a university. Good luck!

I wanted to mention one other thing. When I had my videoconference with the top plication surgery expert in the country, I asked him about the failure rate. He told me that when plication surgeries failed, it was most often in patients with previous spine issues. I don't know if that pertains to you, but it may play a factor.

P.S. Who diagnosed your paralyzed diaphragm? Did you have a SNIFF test, which is the definitive test that determines if the diaphragm is paralyzed. The doctor who ordered and evaluated the SNIFF test should be able to help you find a qualified thoracic surgeon too.

After years of digestive problems. Nexium for GERD. Failed Stress test, (extensive heart evaluation —it was fine) Misdiagnosed Asthma/emphysema,
Several trips to Urgent Care and ER with being told it was inflammation, once they wanted to do exploratory surgery ( I said no). And still no one found the real problem. You even start to question yourself after awhile.
I have no other major medical issues. My weight is ok for height and age. (77). My fear is I will get too old or develop other problems and not be able to do surgery later.
I’ve had 3 Sniff tests and all show paralyzed left diaphragm First one was a local Thoracic Surgeon who recommended Diaphragmatic Plication. Went to a large University run hospital in St Louis to a Thoracic surgeon for a second opinion. I was told my digestive problems have nothing to do with my Diaphragm and because my oxygen level is in the upper 90s—be happy!! In the meantime Covid hit and then my husband was diagnosed with bladder cancer. It’s hard to be happy when you can only eat small meals, do deep belly breathing, eat a modified gluten and dairy free diet and take Miralax and Colace daily, have SOB and limited energy. I have learned to “live “ with it. My primary kept pushing me to get more tests.
My husbands Urologist said he needed more than he could do so we chose Mayo ( Rochester) even tho it’s a 12 hr drive. After diagnosis and treatments we found ourselves going back to Rochester every 3 Mo. In October I decided to get checked out. Thoracic and Gastroenterology Dept. both were involved. They are in agreement that by doing the DP to hold the diaphragm in place and reposition the stomach, spleen, intestines etc to a more natural position (they are jammed into and have pushed the lung higher ).
The left lung would most likely be able to move back to where it belongs and be more functional. My stomach is in a partial intrathoracic position (basically wrapped around or folded over itself). The Drs are wonderful and I trust their judgement. CT s and X-rays are clearly spot on. And with the great care my husband is receiving I feel they are correct. However it’s still a scary procedure. I would just like to hear from someone who has had similar problems and how their surgery turned out. And especially at Mayo/ Rochester.

Dear Toby77, I had my surgery at Integris Babtist Health Hospital in Oklahoma City, OK.
It was done by robotically .
I'm having severe breathing problems and I've been to numurous doctors and I got no relief .
My heart doctor told me that me the my breathing problems are starting to affect my heart, so he is going to refer me to Mayo Clinic in Phoenix, AZ.
Take care.

Dear seniordon09
Thank you for responding. I’m sorry your surgery isn’t helping.
Breathing isn’t my main problem but I certainly sympathize with you. I am totally pleased with all aspects of Mayo Rochester.
Just saying yes to any
surgery is hard but especially one that takes such a long recover time. I hope you can get seen in Phoenix. I’ve heard Dr Stacey Bremer is great for diaphragms and probably very busy. Good Luck.
Toby 77

Have you been on bipap therapy? In NJ there is Dr John Bach at Rutgers who has a website breathenvs.com with local resources. Dr Kaufman at hackensack also performs phrenic nerve reconstruction. Good luck!