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Paralyzed Diaphragm

Lung Health | Last Active: Apr 9 7:23am | Replies (333)

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@nla4625

@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

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Replies to "@charlier I don't think you've gotten very good advice from whoever told you there was nothing..."

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.