What are symptoms of Phrenic nerve damage?

Hi Nicole g. My name is Debbie. I had a bed stomach virus in August 2017 that resulted in a 1 time auto immune response and attacked my phrenic nerve. I met with dr Kaufman and he recommended dr brown who confirm my right phrenic nerve was dead and resulted in a raised paralyzed Diaphram. Unfortunately I am having trouble with saturation levels. I also contracted bilateral viral pneumonia and bronchitis with in the next 6 months which is making it hard to to function. I too went thru a bunch of tests trying to rule out other diseases and autooimmunes because of the need of supplemental oxygen. I m am so glad I read your story I Feel so alone. I noticed this was written over a year ago can you please reply if your husband ever did surgery with dr Kaufman and what was the outcome. Hoping for good news !! My email ***this post is edited by moderator *** *** posting of private e-mails is not allowed *** *** all questions should be discussed on our website *** Please read our Terms of Use​ Please respond soon !!

I was in an accident last Friday and was released from hospital saying I’m fine. Constant headache, dizziness, nausea, back numbness and now numbness under my left Breast has me searching. I feel myself breathing now, feel my heart skipping beats and my blood pressure has gone from norm of 110/54 to 148/100. Went to ED and they said I have post concussion syndrome. I’m very concerned because of the numbness is my thoracic region. Best news was that CT was clear. Not sure why I’m having these scary symptoms.

I have phrenic nerve palsy bilateral which means both sides are paralyzed. It started out i had trouble sleeping on my back, it was difficult to breath, my doctor told me to quit smoking so I did, but it just got worse finally I when to a pulmonary Dr. who said he had seen this beforehand it was rare, he then sent me to a neurologist and after a several test it was determined that my Phrenic nerve was paralyzed. the neurologist pretty much told me to live with it, my stomach mussels help me breath all the time with causes abdominal paid and at night I use a bi-pap machine to breath. Im not sure but I have a rash on my lower back and I think it also has something to do with this condition, things I used to do with ease now are more difficult, walking up hill, up stairs, and even flat ground can sometimes be a challenge. I am now looking at diaphragmatic pacing or phrenic nerve reconstruction by Dr. Kafman in NJ, my neurologist told me to be weary of Hollywood Doctors but what would he do if he had what I have. I suspect the same thing I am doingI hope your friend doesn't have what I have because it sucks. they say if it is your phrenic nerve go into a swimming pool up to your chest if it is your phrenic nerve you won't be able to breather at least it will be difficult.

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so, what are the results? i have same problems ,from an old whiplash, not sure what to do? thanks, Andy

I fell and went paralyzed from the neck down so I had to have surgery to get the pressure off my neck. Before the operation I could breath great but while I was in surgery the doc. hit my phrenic nerve an now my left diaphragm is paralyzed and I am on oxygen 24 hrs a day. I have learned to walk and feed myself again but it happen when I was 52,now am 54 and wear a diaphragm pacer that zaps my diaphragm to try to make it move. I just want everyone to know they are not alone. and I do believe in a healing/miracle working God,so hang in there an GOD BLESS !!

Hi I just read about your husbands situation. I to have a paralyzed right diaphragm. Comforting to read your story. Thank you
Sincerely, The Hopeful.

Did you have this Surgery done. I have this from Heart Surgery Ablation.

May I ask how did/does your husband sleep. My husband has been diagnosed with the same issue. He cannot lie down at all. He loses his breath and must get up immediately. He has been sleeping in a chair upright We cannot seem to find a comfortable sleeping posture for him. The more he sleeps in the chair the more the phrenic nerve is affected and now he has a condition that has his neck down and he cannot lift his head. Very painful

Dear Nicole,
Your husband is a very, very lucky man!!!
Your letter is the most informative I have ever read about this subject.
I believe you are a lay person, BUT you have such a great grasp of this underdiagnosed issue!! I salute you, and wonder how your husband was
finally helped in some way. He has YOU; the best start anyone could have. If you have the chance, please let me know how you are BOTH
doing.......
I injured my phrenic nerve approximately 21 years ago when I was a passenger in a motor vehicle accident. I fractured the first two bones of my neck ( in medical jargon C1 and C2 fractures), but unfortunately for me, the fractures were missed. Some years ago I went to see another physician who subsequently sent me to another MD. He asked me, when I broke my neck ( a great deal! of scar tissue was seen in a Cat Scan where the two fractures occurred), and kind of treatment I had. Zero! (Here is the 'funny' part of my story. At the time, I was working as the Emergency Room Nurse Practitioner in a large Boston teaching hospital.
I am so extremely impressed with your understanding about this severe problem, and of course your great love for your husband,
I am getting worse each day, and doubt there is much if anything that can be done for me. But YOUR letter touched me!
I sincerely hope that all is well.

Sincerely,
Mary Ann
 

Hi Nicole We are going through the same exact thing with my husband, his lung capacity is 50%??? he has lost 40% of his lung capacity on left lung so we are curious about Dr.Kauffman I hate to be forward but would you mind giving us a ballpark idea on the cost of surgery as we will have to pay out of pocket most likely sell our house to pay for this surgery but as you know nothing is worse than seeing the one you have been married to for 40 years not be able to breath i would sell all of it, its just stuff. any help you can forward would be gratefully appreciated hope Hubby is doing well much love, the Harmons,

_removed_

Nicole G.
I hope your husband was able to get the phrenic nerve surgery and pray he is in good health today. Can you write an update on your husband's health? Can you also answer some of the unknown questions you stated in your post? I've had the hiccups for over a month now. If I don't have the hiccups much then I feel like someone is sitting on my chest! Most days I feel sick to my stomach! I've had a chest xray, colonoscopy & endoscopy. The only thing in the medical findings were internal & external hemorrhoids. I'm quite frustrated that I'm spending so much time & money and no diagnosis in site. What type of doctor or specialist should I ask to be referred to next? If you having any suggestions,I would greatly appreciate them.
Thank you
Stacy

I had my phrenic nerve damaged during heart ablation. I have the exact same symptoms; they diagnosis was confirmed via sniff test. My symptoms are shortness of breath when standing, climbing stairs, any exercise, getting out of bed, laying flat, reclining in a chair, tying my shoes. I had to have a special chair made for me at home as any reclining causes increased difficulty.

Does phrenic nerve palsy cause automatic breathing to stop i.e. does everyone have to manually control their breathing?

I am trying to figure this out, as I have to manually make myself breathe all day long for almost 5 years. Doctors haven’t found an answer but I have an appointment tomorrow and I’m going to bring this up. I’d love to discuss your symptoms. Is there a way you can contact me privately about this?