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

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

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?

Talked to another FF on my department that had Thoracic Outlet Syndrome. He had a decompression procedure done in Houston by Dr. Echo and says he’s ready to fight fire again.
I started this career later than most so I turn 50 this year, but still a lot of life left.
I am ALL for seeing pulmonologists and other specialists. Currently, there are NO pulmonologists in my state that will take a work comp case. Along with some other specialists that don’t like working with work comp either.
So that is what my attorney is currently fighting. The fact that this is all job related and work comp has done nothing but 2 rounds of physical therapy. I’ll have to see what a judge says before pushing forward.
Although, you brought up a good point that I have also considered. The fact that my nonworking (left) side of my diaphragm is sitting on the base of my left lung cannot be good long term.

@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?login=true
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.

Thank you for the comment Jennifer. I do have an attorney representing me currently, it’s just a slow, drawn out process.
And I am aware of Kaufman who does these surgeries, i just have so many questions. Am i even a candidate? Is the risk associated with a surgery worth it for my situation?
As I stated earlier, I have seen zero doctors about this. Only my city’s general doctor.

@firefighter66 I realize that it will be a fight to get medical care that you need, and it really should not be like this. You may want to get involved with organizations who do fundraising to help firefighters and see if you can raise money to get some medical opinions on your own. You do have the right to seek your own medical care and get an informed opinion about how much function you have lost and what treatments could help you regain function. You could also try something like Go Fund me to try to raise funds. In the mean time, you still need to pay living expenses while you can't work.

Unfortunately, lawyers who represent employers with work comp situations are looking to save money by refusing to pay for medical care, and sending someone to a so called expert who is hired to discredit the patient so the employer can claim that they are not responsible for the treatment costs for the injury. Is there a union that represents firefighters that can guide you?

Self representation at a work comp hearing probably isn't a good idea unless you know the legal tricks and how to negotiate a fair settlement which includes the loss of use of the body part on a standard chart, and the loss of income from future employment because of the injury based on how many years that should be before retirement. An injury attorney who does a work comp case representing the injured worker is probably bound by law to the fees that they can charge their clients. It can be something like 25% of the settlement plus the expenses of the case like paying for depositions of expert witnesses. You would have to ask a legal expert. You are going to have to ask for what you want because if you don't ask and keep asking, you may be ignored over and over. The last time I checked, I didn't find anyone at Mayo doing reconstructive surgery for phrenic nerves, but there is a Regenerative Medicine department where you could ask that question. It may be worth finding out how much a phrenic nerve graft surgery would cost so you can plan for your future and how you wish to settle your case. This doctor says he is the only one performing this surgery at this time and it may be very expensive. You are going to have to be your own advocate.

Yes I have heard of him, basically just through Google, but I appreciate the info. I’m just currently in a bad spot BECAUSE it’s a work comp situation. I assume the city I work for will not want to send me to see a top doctor or go to the Mayo Clinic, etc. They aren’t in the business of handing out money to potentially fix someone quickly. It usually takes years for the entire case to be settled.
I don’t even know if i AM a candidate for surgery because I have been sent to literally no one. Since October of ‘21 I’ve done two rounds of physical therapy and that is all.

@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?

I can't say that I know how you feel, but I have suffered nerve damage due to surgery. Nerve pain is a whole other monster. Regular pain meds seem to do nothing at all for it. Not sure if this will help, but I have neuropathy that's kind of severe and was unable to take the prescription meds for it. The neurologist recommended 600mg per day of Alpha Lipoic Acid. Someone else recommended Rejuvica's Nerve Factor Advanced. I'd already tried several natural remedies that didn't work, but the ALA and Nerve Factor together have all but stopped the nerve pain and burning in my hands and lower legs and feet. It has been amazing, though it hasn't really done much for the nerve damage from hip and knee surgeries. You may want to look into it, anyway, until you can get a doctor's help. I also take 300mg daily of CBD oil under the tongue and I have to tell you, it has helped more than the pain meds did without the nasty side effects. I use Cresent 9000. It's quite expensive, but when you're out of options and in pain it's worth the sacrifice. It doesn't stop the pain but makes it bearable as long as you don't overdo. Anyway, I hope that you're able to see a doctor who can help you very soon. It has to be scary and frustrating when you're hurting and can't get help. My prayers are with you, Sir.