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DiscussionPhrenic Nerve damage and paralyzed diaphragm: Anyone else have this?
Lung Health | Last Active: 5 days ago | Replies (204)Comment receiving replies
Replies to "Just found this group while googling phrenic nerve damage and trying not to spiral mentally from..."
@firefighter66 I just wanted to pass on some information that other patients have shared for a surgeon who does a graft of another nerve to replace a phrenic nerve. You are a younger guy and this may be an option to replace some lost function. You would be trading one nerve for another, so something else may be compromised, but I just wanted to let you know this surgeon does this in his practice.
https://www.advancedreconstruction.com/phrenic-nerve-program/nerve-decompression-grafting/
He also practices out of UCLA
https://www.uclahealth.org/plasticsurgery/phrenic-nerve-repair
Had you heard of this type of surgery before?
@firefighter66 I'm not sure that I've seen all your posts or comments but wanted to weigh in. My paralyzed left diaphragm was diagnosed around two years ago, and I've been learning as much as I can about this condition since then. I am not a doctor or medical professional...so please read these comments with that in mind. As I understand your story, in April 2021 an elevated left lung showed up on an X-ray; and you were diagnosed with a damaged phrenic nerve in October 2021. How exactly was that diagnosis made and by whom? It sounds as though you haven't seen any lung specialist for treatment or diagnosis, so I really wonder about this diagnosis. To see if the phrenic nerve is working, you need to have a highly specialized test called an EMG (electromyography), where a technician sticks a needle in the phrenic nerve to see if there is a response. Usually you have to go to a big major medical center to find qualified people to do this test. You also should have some sort of MRI, CT scan, or ultrasound test to see if something is pressing on the phrenic nerve. To get a definite diagnosis of a paralyzed diaphragm, you need to have a SNIFF test.
Once you have a definite diagnosis, you can go from there. From my understanding, qualified doctors who know about paralyzed diaphragms (and there aren't many of them, sadly, because it is such a rare disorder) recommend waiting for a couple of years to see if the phrenic nerve will heal on its own. Surgical options include attaching a diaphragm pacemaker (Dr Ordners at University Hospital in Cleveland), nerve graft (Dr. Kaufman in New Jersey) or plication surgery by a number of highly specialized thoracic surgeons around the country trained in using VAT minimally invasive chest surgery with robots. I highly recommend joining the facebook group for people with paralyzed diaphragms to learn about all of this. There are 900 members now who have had every conceivable symptom, treatment, concern, etc, regarding paralyzed diaphragms, including having to deal with workman's comp or going on disability (which I guess are 2 different things). If you join the group, you can do a specific search on workman's comp to connect with people who have dealt with them. People on this group know more than most doctors about paralyzed diaphragms and are willing to share their experiences, answer questions, and provide support. I honestly cannot imagine not being able to go to a doctor of your choice because of workman comp rules and am glad you are working with a lawyer. I would also recommend going back in your medical files to review previous x-rays. X-rays I found from 20 years ago showed I had a raised lung, but I didn't have symptoms which led to my diagnosis until a couple years ago. If this was an issue before you became a firefighter, maybe your insurance will cover it and you won't be restricted by workman comp rules. It's worth a shot. I had some questions about my condition that I wasn't sure my excellent pulmonologist and thoracic surgeon had enough experience with paralyzed diaphragms to answer. Thus I had a videoconference with a specialist in New York who has more experience than anyone in the world with treating paralyzed diaphragms and got my questions answered. I remember feeling at a total loss when my paralyzed diaphragm was diagnosed; but I at least had a diagnosis that I felt was correct. If you haven't had the SNIFF test, I don't know how you can be sure you have a paralyzed diaphragm. It really makes me angry that you as a firefighter and public servant aren't getting adequate medical treatment. Maybe someone on the facebook page will have some ideas on how to remedy that. Please keep us posted -- best wishes! Nancy
Gosh, Firefighter66, that sounds awful. My late husband had a similar problem with doctors not wanting to take his case, but we kept trying and did find one who was sympathetic and did surgery. Please keep trying to find help.