paralyzed diaphragm

Phrenic nerve injury

PZiglar01PZiglar01 7 months ago 41 Replies
In September I had a heart ablation. I continued to have labored breathing after the ablation. After six weeks of going through this my cardiologist Took an x-ray and compared it to the one before the ablation. He sent me to the hospital to have a CT scan done. He told me that the results show My right diaphragm is paralyzed. This is what's causing my labored breathing. This was due to the electrophysiologist injuring my phrenic nerve during the ablation. Needless to say, I am not happy with the results. He is wanting me to continue this breathing for six more months to see if it will heal on its own. If it doesn't, he is going to insert a diaphragm pacemaker. I just want to know if anyone has ever had to go through such a procedure and what the final results were. Thanks so much
BELL'S PALSY
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Carolannjp1
4 days agoCarolannjp1
I have a right diaphragm issue also ...in September2016 I wasn't feeling well couldn't bend down to tie my shoes my Dr took an EKG and sent me to the hospital they said I was having a heart attack ...2 days later all test ran and no heart attack in Oct still wasn't feeling well went to regular Dr told her couldn't breathe I needed a inhaler was given one a couple of days later follow up inhaler didn't work she sent me to a pulmonary Dr there she went through all the files found x-ray from hospital that my right diaphragm was elevated so she order a bunch of test to rule out tumor cancer all test came back normal she then told me to see neurologist ( by then I read up on elevated diaphragm and what causes it) do when I went to the neurologist she told me 99.9% it's wasn't the phrenic nerve (no emg done)
So went back to pulmonary Dr and she told me that I was to lose 15 pounds and it should go back to normal see u in 6 months .... and that if it didnt go back i would have to have a pace maker put in so not happy with any of these Drs I googled phrenic nerve repair and a Dr in New Jersey came up I called and I was a candidate to see him he was very sure it was the phrenic nerve 100%.... i went to see this Dr and told him what was told to me by Drs in my area here is what he said
1. If your phrenic nerve is damaged a pace maker will not work because the nerve needs to be working in order for a signal to get to the diaphragm to work!
Ok so my emg showed phrenic nerve was the cause of my diaphragm issue (scar issue injections from c-5 c-6 surgery)
On May 20th 2017 I had the phrenic nerve repaired where they took the nerve from my right leg and connected it to the nerve in my neck before my surgery my diaphragm had no movement x-ray after showed some move ment it can take up to 1 year to 2 years to get full recovery ....I am in pt now learning to retrain myself to breathe the correct way ....i have educated myself so much on this that I would not stop till I found a Dr that knew what he was doing this Dr pioneered this surgery and is the only one in the United States that know what he is doing ....hope this help someone out there

You can google and Kaufman will come up. I talked to him and several pulmonologists about him. You have to wonder why only one doc does this. He told me the chance of recovery depends on where it was snapped. The nerve is spindly and hard to locate. The thought of him digging around to find it? Then if he is able to repair, you still have to do therapy for a year in hopes of the muscle coming back. Plication is also risky of infecting stomach lining. If damage was in beck as mine was from chiro adjustment, sol. But I have been building that one lung up to 95 percent, better than a gamer. I bike, ski, windsurf, sail. Life goes on. You don't need oxygen unless you are copd.

First off, thanks to everyone on this thread for sharing...it seems no two stories are the same, but all helpful.

Short Version: I have a frozen phrenic nerve on my right side and paralyzed diaphragm, which according to my Pulmonary specialist at Northwestern in Chicago is the result of Parsonage Turner Syndrome (PTS).....this all came about 12-14 months ago in conjunction with blood clots in my left leg, which then created a pulmonary embolism in my left lung, no clear cause on the clots to this day.....I bring this up because I'm still not clear which came first or if one thing caused the other.....I'm a white male, non-smoker, mid-40's, a few pounds overweight, but generally healthy. Also, asthma seemed to have cropped up, so my breathing issues have included a 1) raised diaphragm, 2) PE, 3) ashtma.....if it's not one thing it's another!

The PTS was triggered by a nasty case of the flu (or flu related) in early March, worst I've ever experienced. By late April, all of a sudden, I was experiencing shortness of breath. At that point, I wasn't sure what it was, saw a Pulmonary specialist outside of Northwestern, who put me on Asthma inhalers. Also, I had just gotten over a bad case of kinked neck on my right side, which hurt like crazy for about two weeks and then went away.

I eventually was admitted at NW with my breathing issues and my Pulmonologist figured out that I PTS, given the neck pain and the frozen phrenic nerve. I also lost my voice at times.....PTS can impact vocal cords as well....I did not have muscle atrophy like many, but it did impact my phrenic nerve and paralyzed diaphragm.

It's been a full year now and phrenic nerve has not "awakened". I'm doing OK, healing from the PE took time, but the diaphragm still does not function properly on my right side. It's raised some, but it sounds like many on this board have had it more severe that I do.

Exercise is difficult because of the breathing and should focus on losing a little weight to see how that impacts it. My sleeping has been a challenge, I mostly sleep sitting up or on my right side, which seems to work best.

I'm hesitant to try any surgical procedure at this point, I'm not looking to create any new problems at this point.

Question....has anyone tried acupuncture on the phrenic nerve? How about any other nerve stimulation treatments (not sure what those would be)? Just curious.

Thanks,

JLC

I was also diagnosed with a paralyzed diaphragm (right side) 3 weeks ago. I was told to live my life and don't let my condition get in my way. I'am doing better this week but have days when it is more difficult to breath. I also still have days when I'am very angry with my surgical team that caused a preventable condition. Attitude is everything, but mine still needs some work. Your blog was helpful and good to know we are not alone. Thank you!....RTG

I am ray 65 i was working last summer and was hit in the back many times all day long by the lown mower seat over and over. I could not breathing well at all i went to a specialist he did some test he said i had a Frozen diaphragm on the right side .but but they will tell me not a thing to help or fix it at all ray 

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I have a paralyzed diaphragm on right side. It was discovered with pneumonia. I have Limb Girdle Muscular Dystrophy. My paralysis is directly related to this disease for me. Dr says eventually will have to have the diaphragm tacked down .

My left side diaphram is parealized. I'm 71. This happen May 30 this year through an hiata hernia large...surgery. after that I have this Paralized Diaphram. I'm not better at all. Are there any help for me. Surgery or treating. I have R.ARTHRITIS rather bad. Is this going to get worse. I have great doctors. But the won't say to me. I will not improve. Thank you.

I'm interested
I'm 71. Don't know if I would qualify

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I have a PD on oxygen 24/7 due to being below 90. I'm finding this to be very debilitating . Any advise is greatly appreciated. Its been 6 months, dr wants to wait 2 yrs to see if it coreects itself.

Hi Ive recently come home from hospital after a 9 day stay because of phrenic nerve palsey , I had ablation on my heart in November which has caused this on my X-ray and ct the report says my right diaphragm is raised , I am in such a mess regarding my breathing and activity im on a cpap breathing machine this is day 3 of the machine at home , I’m struggling when I take it off even at the moment when sat still , I’ve no idea how damaged the nerve is I’m just told some people heal in 6 months or a year , I will eventually get a physio appointment I’ve been show a basic breathing exsersise to help but was so breathless yesterday just put the mask back on this is awful I’m a 39 yr old lady . I will be having another respiratory clinic appointment next month as saw a respiratory dr during my hospital stay and he will hopefully review me regular.

Hi I’m a 39 yr old lady who too has a right raised diaphragm and this was caused by my phrenic nerve being damaged during a surgery on my heart , the drs in the hospital told me after I had a ct scan , however I was sent home with no information as to how damaged it was or recovery time ect I just saw it stated right raised diaphragm on my discharge notes, as it was Christmas I carried on doing the smallest activities in the house getting more and more breathless, I can’t bend over or lay flat after a larger amount of food I was sick it felt as if the food caused less space for me to breath , lift legs to dress I was more breathless,I felt my bra was strangling me so couldn’t put it on , my trousers are difficult to do up as sure my abdomen is swollen yet I weigh less ? Anyway as the days passed it was limiting my breathing so much I went to my gp who sent me into hospital there I stayed 9 days at first I wasn’t given anything like oxygen , until a respiratory dr assess me and referred to my symptoms as phrenic nerve palsey, he says my phrenic nerve may get better in time but time will tell to give my diaphragm and chest muscles a rest I’ve now got to use a cpap machine for sleeping and in the afternoon on when need it I have a basic physio exercise which you push out your tummy and then breath in tummy pushed out first , a physio in hospital told me this is going to take a lot of time and patients, I’m terrible when I take off the breathing mask I’m worried I’m going to completely need it and be depending on it for a long time , but like you no definite answers have been given to how damaged the nerve is seems time will tell . This machine does not heal it just support s the breathing given a relief .

Omg 2 yrs I can’t believe that have your symptoms improve at all ? In the last 6 months

Where is this doctor exactly?

I to have what I was told is a frozen diaphram, not sure why, doctor said probably occured during a fall I had at work,30', lucky to be here! Anyway, the dry cough sucks plus I get only a few hours of sleep a night, weezing drives me nuts. I find when I get my yearly chest cold the flem lasts much longer because of the Frozen dia. Hope you feel better, your not alone.

A follow up on my original post from several months ago.

My phrenic nerve (right side) froze, which froze my diaphragm back in April of 2016. Over New Year's my lung started working again, I could feel it.....I had a SNIFF test (like a video chest x-ray) and confirmed that the phrenic nerve did in fact "wake up", so I now have partial movement in my right lung......not 100% better, but good enough that I can exercise again and generally feel better.