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

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?

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.

@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.

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

@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

@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

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.

@firefighter66 You are right. Every surgery has risks and has a benefit to risk ratio. Some of that is because of the skill of the surgeon, and you want a surgeon with a lot of experience in the surgery you consider. The other part of the equation is your own personal health, your age, other health conditions and if you have other risk factors. You have to ask yourself how difficult is it now to live with the disability, and how will that change as you age if there is no intervention? What else could happen in the future to make it worse if you continue to live with compromised lung function? How would your function be different if you did have a proposed surgery the good and the bad?

Since your profile says you have 18 years at the fire department, that makes me guess you may be in your forties. You should have a lot of life ahead of you. I also think that you could be at significant increased risk of lung infections because your damaged lung isn't moving properly, and it takes movement to keep clearing the phlegm out of your lungs. When that gets trapped, it can easily become an infection. Infections like pneumonia or Covid of course can be fatal, and there are also bacterial/fungal lung infections like MAC that are very hard to cure. You could experience other lung disease that takes away function and need oxygen down the road. I have a condition called thoracic outlet syndrome that makes one side of my neck and chest too tight, and I have gotten infections repeatedly because of some trapped phlegm that start on the side that doesn't move as much because of chest wall tightness. It doesn't help that I have allergies and asthma adding to the issues. Your situation has to be so much worse than my experience.

Here is some of what I found about the phrenic nerve surgery. Some of it may be hard to decipher, but you could pass it on to your doctors.
https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0036-1588018
https://academic.oup.com/icvts/article/32/5/753/6082780
Would you consider being evaluated by a pulmonologist and neurologist? Doctors in these specialties may have a better understanding of this issue and determine how much function you have lost. You may want to make a list of your questions and keep adding to it as you think of more so you are prepared when you do see a doctor. If you do contact Dr. Kauffman, you would be asked to provide test results from these specialties. Are you a candidate? The only way to find out is to ask.