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Paralyzed Diaphragm

Lung Health | Last Active: Nov 20 5:32pm | Replies (341)

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@lululinden

Hi, this is my first time posting, and not sure I'm doing it correctly. I have a paralyzed left diaphragm, was scheduled for diaphragm plication surgery, and recently found out about phernic nerve renerbation surgery done by Dr. Matthew Kaufman in New JErsey. As far as I can tell, there are only two treatment centers on the USA who offere this: Dr. Kaufman's New Jersey clinic & UCLA. Unfortunately, my health insurance is tied to state affordable care act & will probably not pay for out-of state & out-of-network surgery. Has anyone on this site tried to travel to one of those locations & how did it go with your insurance?
Alternatively, does anyone know of any surgeon at Mayo Clinic or in state of MN offering this surgery? Thanks for any leads!

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Replies to "Hi, this is my first time posting, and not sure I'm doing it correctly. I have..."

Hi @lululinden, Welcome to Connect. There is another discussion on the different treatment options that might be helpful to get your questions answered.
--- Treatment Options for Paralyzed Diaphragm: https://connect.mayoclinic.org/discussion/treatment-options-for-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?