Paralyzed Diaphragm

Mayo in eau claire

Does your cousin have a diagnosis of having a paralyzed diaphragm as a result of the nerve being cut or symptoms indicating he does, such as shortness of breath after exertion, breathing problems, lack of stamina, etc. If so, he should see a thoracic surgeon, who can order the needed diagnostic tests, advise him, and perform plication surgery if he is a candidate. Paralyzed diaphragms are pretty rare, and plication surgery is not for the faint of heart. I'm putting it off for as long as I can but will do it when my symptoms are really limiting me. Many who have had it done are experiencing pain weeks and months afterwards and are taking months to recuperate, depending on how the surgeon does the procedure, how physically fit they are at the time of the surgery, etc. My surgeon didn't warn me about those things, which is why I'm grateful to the people on Mayo Connect and the people in the facebook paralyzed diagram group who have shared their actual experiences -- good and bad. I now know what to realistically expect and will be mentally prepared to deal with whatever comes. I hope your cousin is doing well. 3 heart surgeries is a lot to endure. His cardiologist can refer him to a thoracic surgeon, who would most likely know more about paralyzed diaphragms and treatment options than a pulmonologist.

@nla4625 @grump If you might be looking for another opinion, there is a surgeon who grafts a nerve to replace the phrenic nerve. I saw another patient mention this so I'm passing along the information as I have no experience with this issue. Here are some links.

https://www.advancedreconstruction.com/phrenic-nerve-program/
https://www.uclahealth.org/Workfiles/clinical_updates/plastic-surgery/14v2-11PhrenicNerve.pdf
https://www.masserypt.com/wp-content/uploads/2018/05/Massery.-Phrenic-Nerve-PT.-Rehab-Surgery-Chap-11.-2017.pdf

I have no nerve damage so this is my only option

@grump. If my phrenic nerve was working, I would definitely see if I was a candidate for diaphram pacing before I'd even consider plication surgery. Because my nerve isn't working, I don't have that option....but it sounds as though you might. One of the members of the facebook paralyzed diaphragm group has posted extensively about his really positive experience with diaphragm pacing, and it might be valuable for you to join the group to read about it. I posted information about this on Mayo Connect before with the name of the doctor doing it at University Hospital in Cleveland. You could google him or contact his office if you wanted to pursue it.

Is not an option for me- the diaphragm pacing

Ok -- I really hope you'll be on the road to good health soon. Take care.

I am having trouble in finding someone that will do a EMG to see if my Phrenic nerve in my area (Springfield Mo). I have been told that I have no more recourse other than just live with my paralyzed left diaphragm. It is a bit frustrating that there is no options for me except trying to figure out where else I can go to get things done.

@charlier I don't think you've gotten very good advice from whoever told you there was nothing you could do about your paralyzed diaphragm and you just had to live with it. From my research, there are 4 things you can do: 1) wait and see if the phrenic nerve heals itself and the diaphragm starts working again - as long as 2 or more years, 2) have plication surgery to keep the diaphragm in its proper place so your lung capacity can expand and you will breath better, 3) diaphragm pacing where a pacemaker is attached to your diaphragm and kickstarts your diaphragm into working again, and 4) have a functioning nerve grafted onto your non functioning phrenic nerve. For the test you want to evaluate the condition of your phrenic nerve, you need to get to a major medical center, because it is a difficult test to administer. I'm not familiar with Missouri, so I did a quick search on best hospitals in Missouri and then narrowed it by best hospitals in Missouri dealing with lung/pulmonary issues. All my tests relating to my paralyzed diaphragm were done at a hospital, and my thoracic surgeon has his office there as well, which is why I looked at hospitals. The Barnes-Jewish Hospital in St. Louis was listed as the top hospital in Missouri and is ranked nationally as #21 in the country for lung/pulmonary surgery. Mercy Hospital in St. Louis was ranked as 4th best in MO and as high performing for adult lung/pulmonary issues. I'd recommend finding a thoracic surgeon affiliated with them or in your area. They will know more about paralyzed diaphragms than a primary care physician or pulmonologist would and will be able to help you. If you're willing to travel out of Missouri there are a lot of options, beginning with the Mayo Clinic. It's a pretty rare condition. Good luck! Contacts:
For diaphragm pacing: Dr. Ordners University Hospital, Cleveland.
For nerve grafting: Dr. Kaufman, New Jersey

I went to a Mercy Pulmonologist here in Springfield, he was the one who said the only option was go somewhere else. That was it. My regular doctor said she has no idea on where to go or who to see. I will contact Mercy in St. Louis to see if I can get in there. I just had a Spinal Stimulator implanted for nerve pain and neuropathy. It been an interesting year so far.