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

I wasn't very clear in my previous post because I was thinking about the present, ie what doctors could do for your brother's paralyzed diaphragm now. After waiting 2 years to see if the phrenic nerve heals itself, there are a few things he can investigate that can be done if his symptoms are causing huge problems: diaphragm pacing, plication surgery, and nerve grafts onto the phrenic nerve. The main doctor who is doing the nerve grafts has an age limit for his patients, which I can't remember at the moment -- maybe 69? Hope this helps.

Your poor brother. I'm so sorry he is going through all this! After damage to the phrenic nerve, most doctors recommend waiting up to 2 years to see if the phrenic nerve will repair itself before thinking about doing anything else. If the damage occurred a year ago, it still might heal itself. He is lucky to have you in his corner. Best wishes to you both!

They can put in a device like a pacemaker, it’s a nerve stimulator, for some cases. It is very successful in helping treat phrenic nerve damage.

My brother had a double lung transplant a year ago. He has been hospitalized except for 3 weeks . His Phrenic nerve was damaged, he has a trach, on tube feedings, has had Klebsiella twice, CMV, told a couple weeks ago he was in acute rejection and was treated twice with IVIG. Now they are saying he has Chronic rejection, before that they said he had AMR. His kidneys have also failed due to all the meds and problems. He has fought so hard to live. Now he is getting rATG. He has been told nothing can be done for his diaphragm or Phrenic nerve. Please advise. He has suffered a lot but continues to fight to live.
Pam

I have the same problem on the right side. Doctors think it was some kind of damage. I do a lot of swimming and kept it up while trying to figure out what to do. My pulmonologist thinks the swimming helped keep my lung expanded and overcome the diaphragm problem. Passed all my pulmonary function tests and unless some thing comes up the doctor sees know reason for anymore visits. This may not be the answer for everyone, each situation is different.

I recommend dr. Gordon at Temple/Philadelphia

I did a videoconference with Dr, Mark Ginsburg at the Diaphragm Center at Columbia Medical Center in New York and highly recommend anyone with a weak or paralyzed diaphragm do the same. Many consider him to be the leading expert in the country on diaphragm issues. One of the things I've learned since my paralyzed diaphragm was diagnosed is that most doctors don't know much about diaphragms. Pulmonologists know a lot about lungs and thoracic surgeons know a lot about chest surgery, but few doctors in either discipline know much about diaphragms. Thus, I was really glad to find the Diaphragm Center in New York and have my case reviewed and get all my questions answered. People in the facebook group for people with paralyzed diaphragms have recommended doctors they've had great success with around the country, but I couldn't find one reported in the DC area. Good luck!

Everyone Believe, Receive GOOD HEALTH. AMEN

@seniordon09, what about requesting an appointment at Mayo Clinic in Rochester, MN to see if you might get an earlier appointment?

It will be at least 3 months until I can see a doctor at the Mayo Clinic in Phoenix, AZ !
I don't know if I can last that long !?