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

Just found this group while googling phrenic nerve damage and trying not to spiral mentally from all this.
My left unilateral phrenic nerve paresis was discovered in October 2021, months after a left bicep tendon repair. I knew something was off, but chalked it up to getting older and being out of shape after the surgery and recovery time.
My first big house fire after going back to work showed me something more was going on.
Since this is an on the job injury it falls under Workman’s Comp, but I was just told yesterday that there was nothing more they could do because no one in my area wants to take a work comp case. I haven’t seen ANYONE yet, just two rounds of physical therapy. I haven’t even been officially diagnosed yet.
My bicep repair surgery was April of 2021 and I have been on “light duty” since October when the first xray caught the elevated diaphragm with Atelectasis on left lung base.
I assume I will eventually be retired from firefighting from this, but not having seen anyone at all is infuriating.

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@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

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@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

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Thanks Nancy, will look into the group though I swore off Facebook a few years ago and never get back on, lol.
To summarize quickly, I have had and xray, CT, CT w/ contrast and a Sniff test.
Which all show the elevated diaphragm. No it has NOT been “officially” diagnosed. I don’t know if the city doctor can’t or won’t make that official diagnosis. Obviously the jump to Phrenic nerve injury isn’t a blind leap, with the surgery in April. I would certainly like an official diagnosis, but i have to find THAT doctor first

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@firefighter66. Did you read a copy of the report of your SNIFF test? I read the results of mine, along with the results of the pulmonary function test evaluating how my lungs were functioning and x-rays, on my portal account at the medical center where I had the tests done. Your report should state pretty clearly if there was movement of your diaphragm, ie if it is paralyzed. In 74 years I never had anything to do with facebook because I didn't see any value to it and thought it was a real waste of time. I totally changed my opinion after joining facebook to join the Paralyzed Diaphragm Group. I've learned so much from the 900 people from around the country, and world, actually, on it who have paralyzed diaphragms, including suggestions and recommendations of doctors they have worked with successfully. If you're looking for a doctor, you might mention it in a post, say where you live, and ask for recommendations. Most people in the group are totally frustrated with doctors who don't know anything about this condition and have become their own best advocates to find out about it and then really push to get what they need to deal with it. It sounds as though you have a huge hurdle to overcome, ie workman's comp, that I'm certainly glad I didn't have to deal with!!!

P.S. As I understand it, time IS an issue if you want to consider having a nerve graft. I think it has to be done within a certain time period after the phrenic nerve was damaged. I think you could probably contact Dr. Kaufman's office to see if you would qualify for a nerve graft if you were interested in that and find out the particulars, just so you would know.
Anyway, please know you aren't alone in trying to figure all this out. It can be a little overwhelming, as I well know.

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And yes i have the Sniff test results.
Very minimal movement of left hemidiaphragm in both inspiration and expiration with less than 2cm of diaphragmatic excursion.

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I also have a paralyzed diaphragm from the chemo CHOP. It is stuck in the middle of my lung. My heart was also damaged from the chemo. I have COPD last stage, so all this is very hard on me! They say if they could get my diaphragm to work, I wouldn't get so many infections in my lungs! I heard they are using pacemakers to hook up to that nerve. What problems are you having?

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I had a Peripheral Nerve Sheath Tumor that Doctors said should be removed. The tumor was in my Ulnar nerve for my left arm and hand, about 6 inches from my spine, close to my heart, above my left lung and near my Phrenic nerve. The fear of a nerve sheath rupture spreading cancer cells freely to such nearby important organs or following the nerve back to my spine or brain was cause for surgery to remove the tumor.
Surgery was followed up with radiation in the brachial plexus area as additional safeguard in my treatment. Somehow, through it all my Phrenic nerve was damaged that controls the diaphragm on my left lung, leaving it not functioning. It is an unanswered question if the nerve was damaged during surgery or from radiation after treatments. The good news is that my body must compensate for the loss of the diaphragm; I have walked, ran, hiked, worked as much as I want to at my age. (69)
Tests show the rest of my lungs are healthy and there is no recurrence of cancer in the area.
It is interesting to note that the medical term for my diagnosis of a "Malignant Peripheral Nerve Sheath Tumor" is followed with this phrase "as a Result from Previous Radiation"
I was treated for throat cancer 5 years earlier and it included Foton Radiation treatments. It is believed that those Radiation treatments caused the tumor to develop within the nerve sheath over the next 5 years. It is very rare occurrence, near 1 in 1 million chances of this happening to me, I was told.
The lung diaphragm was of little consequence; removing the nerve caused the loss of control and feeling on my left arm and hand. I use to be left hand dominant, I am now learning to be right handed.

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