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

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.

Attorneys are involved so hopefully that forces the issue a bit. I appreciate your post. Honestly I had never even heard of this type of nerve damage and no one I explain it to has any idea either, much less know it was so frequent of an occurrence.

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.

@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?

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 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.

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 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.

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.

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?