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

Your post caught my curiosity. I have suspected for a very long time that I may have some sort of undiagnosed "nerve autoimmune" condition. or the last 20 years or so, to the present time, I have experienced 3 episodes of "shingles without the rash" which was so painful that it took me to the ER. Both went undiagnosed at those times, and resolved on their own (although the neuropathy was VERY painful...).
Not, I have a paralyzed phrenic nerve with no known etiology.
Can you share what kind of condition you were dianosed with?? I am also seeing an Immunologist that specializes in autoimmune diseases; however, no diagnosis yet. Thanks in advance.

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Yes it is a diaphragm plication. You need a cardio/thoracic surgeon to do the surgery. I had it done 2 times. The first time was arthroscopic. I got pneumonia and coughed so hard I broke the sutures. So I had the big surgery the second time.

Hello @renecurro and welcome to Mayo Clinic Connect. This has obviously completely impacted your daily life and I can read how scary this has been for you, and likely your wife.

You will see that I moved your post into an existing discussion that you can find here:
- Phrenic Nerve damage and paralyzed diaphragm: Anyone else have this?: https://connect.mayoclinic.org/discussion/phoenix-nerve-damage/

I did this with hopes that you will be able to connect with members like @suziesunshine69 and @toby77 who have been sharing with one another as well.

Is your goal to find better care and/or treatment options at this point?

Please, anyone with very serious breathing conditions stemming from phrenic nerve (for any cause) miss/malfunctioning, share whatever you can. I have strong diaphragm spasms (“mega-hiccups”) that if not stopped conduce to the entire diaphragm “disappearing”. To make it much worse, very potentially lethal, my intercostal muscles go “out of commission”…but the phrenic nerve has nothing to do with the latter muscles. I don’t feel asphyxia or anything like that; feel nothing but, only in my head, the deprivation of oxygen… as my vision goes dark as in gradually fainting. Immediate CPR with a sublingual TINY tablet of OTC candy laced with peppermint (e.g., altoids) gets me out of it. By the way the sublingual peppermint tablet stops the whole process but only when still in the mega-hiccups phase… which occur irregularly-sporadically, anywhere, anytime, triggered, usually by swallowing anything including saliva, or even without swallowing anything. I have an old serious lesion (from teenager Greco-Roman wrestling) on C3-C4 that, a neurosurgeon suggested, may be affecting the phrenic nerve, in turn affecting the entire diaphragm, by he couldn’t say anything regarding the intercostal muscles. Idiopathic causes is all what all specialists that have seen me “diagnose” and don’t give me treatment (even the neurosurgeon advised me to stay away from surgery ). Boxes of those tablets are in every single room in my house, including garage, shed, backyard, in my pockets, and never leave home without the little tablets… and without my wife, who is very well trained and has robust practice on CPR. I take a daily 50 mg “pearl” of OTC peppermint oil, and “deploy” a sublingual big tablet before even starting the car…always with my wife in the passenger seat. I drive only on backroads; my wife does any other driving.

Yes the big surgery did what it was supposed to do. Recovery time is longer than a arthroscopic surgery. I was 66 when I had the surgery. My stomach just makes horrible sounds after I eat like swishing sound as I breathe. Unfortunately I have not been in the greatest health but I keep trying. Aug 2022 I had a full knee replacement. Still recovering from that now I have Plantars fasciitis. Having both of those, I’ve been walking funny and now my back is messed up. Took physical therapy for my back but have to stop to get physical therapy on my foot then we’ll go back to the back. When I move I am constantly out of breath. It makes it difficult to exercise. But you need to keep moving. Had a spinal fusion in 1992. On the big surgery they put in a nerve block before the surgery started. You then have regular pain meds after the surgery. It’s not an easy surgery to go through but it was well worth it for me. It’s not a cure-all but it helps. Good luck to you and I hope everything works out well.

Was the “big” surgery successful and would you do it again?
I am currently being seen at Mayo (Rochester Mn. ) in the Thoracic and Gastro Departments.
My paralyzed diaphragm
Causes more problems with digestion than breathing. I do have shortness of breath but seem to get adequate oxygen. I do deep breathing exercises. My main problem is my stomach has turned and folded over and I can only eat small portions and have to take Colace/Miralax daily to make it all “work”.
I eat a modified gluten free diet and very little dairy.
The left lung has been pushed up to 1/4 capacity by the wandering stomach, pancreas and intestines. Surgeons here feel it would be beneficial to do the “big” surgery to hold things where they belong with the sutured diaphragm. And encourage it be done while I am physically able. I’m 77 and it good health otherwise.
Has anyone had surgery for this at Mayo Rochester??

I had it done at Shands in Gainesville, FL. The doctor's name is Machuca. He is a Cardio Thoracic Surgeon. He is now somewhere in Miami, FL. You want to check out your surgeon and find out how he does the surgery. I had the first surgery robotically with just a few incisions and a chest tube. Also they did a nerve block before the surgery started. Months later I got pneumonia and coughed so hard the sutures broke. Another 6 months later i had the big surgery. They did a incision about 4-5 inches long. It's been over 3 years since I had the surgery.

I too have a paralyzed diaphragm with no idea what caused it. I am facing possible diaphragmatic placation surgery. Where did you have it done and who was your surgeon?

I did not want a stimulator as I play an instrument and used to sing. I need to breathe when I want too.

Good luck to you too. They have no idea why mine died also. My lungs are very scarred and only my pulmonologist can tell when I have pneumonia. I live in The Villages in Florida. My husband did a lot of researching on what could be done. There is a doctor in New Jersey that sometimes replace the phrenic nerve. You have to have good oxygen. I don’t so I am not a candidate for that surgery. You would have to check with him. His name is Dr Michael Kaufman.