Paralyzed Diaphragm

There evidently is a new clinic in California that does nerve grafts for paralyzed diaphragms, in addition to Dr. Kauffman doing them at UCLA and at his clinic in New Jersey. From reading posts on the facebook page for people with paralyzed diaphragms, I learned that Dr. Kaufman's staff works with his patients' insurance companies to help get them to cover his fee, which I think I read runs over $80,000. You could call his office to see if they take your insurance. However, I also read that the people who answer his phone are not helpful, ie if you are over his cutoff age of 67 or so they will not tell you you aren't eligible...rather you have to send all your paperwork and test results in and have a videoconference just in order for them to tell you you are over the age limit. I haven't read about anyone in MN doing nerve grafts. Where are you thinking about having your plication done in MN if you decide to go that route? Here is the link to the clinic and doctor in California, other than Dr Kaufman at UCLA, supposedly doing phrenic nerve graphs: https://www.losangelesnerve.com/ I know nothing about him...but it's nice to see other doctors are starting to do this important work. If you find any in MN, would you please let us know?

Thanks so much for this info! Really appreciate it. To respond to your question, If I have the plication it will be at U of M Fairview.
It does seem like it would be a great thing if other doctors started doing this procedure.

Diagnosed right hemidiaphragm paralysis.

Welcome, @williaca. Is this a new diagnosis for you? Do you know what caused the diaphragm paralysis?

Yes, still taking test. CT next.

Getting a diagnosis for a rare condition most doctors don't know much about can be pretty overwhelming. Do you have any questions re treatment options, etc. It may not seem so, but you are lucky to have a diagnosis. Many people get shuffled from doctor to doctor for months or years before a diagnosis is confirmed by the SNIFF test. Was yours confirmed this way? Please let us know if you need any information or support going forward.

Yes, the SNIFF TEST confirmed the diagnosis

I have the same condition. I have diaphragm paralysis on my right lung confirmed by a SNIFF test. To date it is idiopathic and my pulmonologist doesn’t seem too interested in discovering the cause or possible treatments. I am 77 and I also have ILD and considering a second opinion.

Morning. I too have a right diaphragm paralysis. It occurred about a year ago a week after I had surgery to remove my right thyroid. A week later very short of breath. In hospital for a week doing tests, finally a sniff test confirmed. I was sent home on oxygen 24/7.Now not using oxygen at all. Still SOB at times if I walk a lot, climb stairs or am rushing. Diaphragm still paralyzed but I can function quite well. Good luck to you.

Welcome, @marinovey. It sounds like you're adapting well. May I ask what led to the right thyroid removal?