Thanks for all the info Ross. i thought there was hope for me also but........ I have a paralyzed diaphram, can't bend over and breath at the same time, can't exert myself, can't sleep well, can't have any presxsure on my chest, etc.
I sent Dr. Kaufman all my records and he sent me to Dr. Brown for nerve testing. and my phrenic nerve is damaged also. Kaufman's office just called me to tell they can't do anything for me because I can't remember any trauma happening to me. I had a bad cold that they thought was phemonia, then copd, then asthma and then the diaphram. Now i thought there was hope for me also but........ Do you know anywhere else I could look for help? I am so tired of not feeling good. I really appreciate all your help.
Marilyn,
The phrenic nerve, which controls the diaphragm, can be damaged durring open heart surgery. That was one of the 1st questions I was asked since ihad that proceedure 14 years ago. Todays procedures are much different as they do "key hole" proceedures. Mime was the old fashion split the strunum and wire it back together. This type of proceedure make the nerve very vulnrable. My damage came from a subclavian bypass. As far as healing itself, it's possible. However keep in mind that the nerve can only live solong in it's damaged state. If it dies or looses to much of it's electrical signal then it's a high risk of recovery. The Mayo clinic helped me recover and repaied much of the damage the original Dr caused. The one thing they could not do at the time was repair the nerve. They saidI had a 6 month window that had long passed. If you have read many of my entries you then know I was very limited in what activities I could do. Today I can do most thingsthat i want to. As far as drinking a sea weed coctail I think that is hope vs reality. If it works for you then i would be very happy . Surgery was the only yhing that help me. And if you read these other sights you will see that it too is not for everyone. If there is anything i can do to help or you have any other questions feel free to ask. By the way my problem began 2 months after my subclaivian bypass.
Hello Annlud, Ross, and all. Well where do I start. I have read ever article here, since I have been on here last, about 2 years ago. I first started to chat with Ross about my condition and he referred me to Dr Kaufman. Please all go back and check out my post 2 years ago so I dont have to retype thank you. Went to Kaufman in May of 2011, he sent me for a nerve test to Dr Cole, he is using Dr Brown I see now, interesting. Well all, good and bad. Let me first say, I would do it all over again. Went in to surgery on May 20, 2011. Had a nerve decompression, and a nerve transfer. Nerve was taking from calf called the sural nerve. When i came out of surgery, I could breath better just by the scaping away of scar tissue that was pressing against the nerve. The nerve graff never did kick in, it has been 2 years. I still pray it may. How did I get this paralyzed diaghram you would ask. Well being a fireman for 33 years I could have had trauma some where along the line. BUT I feel I could have got it from my chiropractor, when he would snap my neck. He was very aggressive with that move. Had a small conversation with him but I will never know how it happened. Had trouble after surgery, had atrophy of my left shoulder, you could see my left back bone sticking out. Went back to Kaufman, he sent me back to Cole for another nerve test. Not fun. There conclusion on my shoulder atrophy was, a under lying precondition. So my conclusion is this. I could breath better, my nerve transfer hasnt kick in yet, and I have atrophy in left shoulder with considerable weakness there also. I still have shortness of breath, also while tying shoes cannot get a breath. I am retired now. Thanking God for my every day and living life. Nick
Hi! I have bilateral diaphragm paralysis as a result of aseptic meningitis (antibiotics were used to treat an infected finger wart!) There has been a little improvement since the onset over a year ago but I still require a bipap for lying down. I have been told nerve regeneration (if it happens at all) happens very slowly. What are the negative effects of phrenic nerve surgery to correct the bilateral diaphragm paralysis?
Curious as whether anyone has sought compensatory relief and/or litigation if their issue is proven to be derived from a surgical procedure? I too have a frozen diafram from a surgery three years ago and have only 50% capacity in my left lung. I care not to go through another surgery since they are so invasive and the prognosis is not good anyway.
Please help with any info, this is driving me crazy and i feel is life-threatening at this stage.
WOW. Finally found others in my boat.Have been researching this for hundreds of hours with little info. Had upper left lobectomy and open thoracotomy 18 months ago. Cancer was tiny in situ 8 mm, stage 1a no chemo, radiation, lymph nodes clear, I was "cured" at age 50 and full life ahead. NOT quite. Have been suffering with breathing problems and have seen 25+ doctors of all types and no answers. Must take a percocet every 4 hrs to breathe. My original surgeon wouldn't return phone calls, couldn't talk to him or get an appt, was totally blown off. Have come to realize and other docs agree that the phrenic nerve is the 3rd rail in surgery and after surgery. It was obviously damaged but doctors shun you b/c they are afraid to admit it and be sued. mine never told me about this possibility and that I'd be disabled for life. i FINALLY got him on phone and he said "get a nerve block" which is BS according to my pain specialist. He said there is "nothing i can do for you surgically even if it is scar tissue and I can't do a thoroscopy."
I asked "so that's it, i have to take painkillers for the rest of my life?" He said probably.
My pain doc says he wrong and said he will call him. So I have 18 months of agony and wondering if I may die each day and 2 doctors fighting each other. REALLY ??? Is this why they became doctors?
I have read about Dr. kaufman a few months ago and set up appt. and then cancelled.Need to do sniff test and dreading EMG as it's very painful and can be dangerous. I keep asking these doctors. can you please send me to an expert in this field in New York City ( I live across the river) they give a shrug and say i don't no anyone.
This is a NIGHTMARE and I'm getting no help at all and feeling hopeless. I have zero quality of life.
Was in hospital for lung function test yesterday (fine as usual) and I delay percocet to see what might show differently on test. Could not do it, about to faint, couldn't breathe, felt like gut reaction to throw up but not nauseous, felt like throat was closing. tech said i can't do this test in your state. i said wait 15 minutes or so. Took percocet and breathing went back to NORMAL!! I don't understand why and neither do all these specialists! Have post-thoroctomy pain in ribcage,specifically under left breast and along incision. The pain and the inability to breathe go Hand-in-Hand it seems.
I wsih to God someone sees this and knows where I can go to see a specialist. I know Dr, kaufman only operates on extreme cases and I may not be one. There must be a Doctor who really understand this.
THANK YOU ALL !!!!
I was recently diagnosed as having paralysis of right diaphragm. The symptoms (problem with breathing, especially when I tried to lie down) came on suddenly. I went to the emergency room thinking I was having a heart attack. I spent 3 days having tests run. They couldn't find anything, releasing me with an appointment with a lung doctor. My breathing improved some while waiting for my lung appointment. One month later, the lung doctor diagnosed me with right diaphragm paralysis. He recommended coming back in one month. What??? Are there any recommendations for a specialist in Tennessee?
After doing research the last few days, it seems there are options for me to consider. Thinking back on how this came about, I had worked all week. That day I had been in a position straining my upper body. I came home with a crick in my neck. I was real tired. I showered and put some lotion on my neck and went to bed. As soon as I laid down, I immediately sat up gasping for air. I walked the floors the first night which seemed to help. The next day I went to work and felt better once I started walking and getting busy. I was OK but tired that day. When I went to bed, the same thing happened, I laid down and immediately got up gasping for air. I went to the emergency room. Any help would be appreciated. I really don't want to wait another month, especially, if there are some options that would help me. I have gotten where I can sleep lying down. Thanks.
Contact me. I just had the repair for this.
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I was also diagnosed with a paralazed diaphragm. I was informed by my doctor to either have surgery or exercise. I opted the later. I have been walking for a month. I don't know if there is an improvement as it takes me approximately 5-10 minutes to start breathing back to normal. I will see if there is any improvement in the next couple of months. I am really concerned.
Hi penny. How long ago was the onset of your issue? Was there a definitive moment or act that you can identify that is related? i can tell you from experience you have to be the driver in taking action on your recovery. Let me know and maybe I can get you in the right direction.
I was also diagnosised with a paralazd diaphragm. My doctor informed me there was two options-have surgery or exercise. I have been researching the web and have not noted one person with the same diagnosis reporting there doctor suggested exercising as a cure. I am really concerned. I have been walking for a month now and at times feel it may be helping. Other times, I am grasping for breath and it is scary. I do need some breathing techique. I am really concerned and disappointed that there is not enough information and remedies for this condition.
Kim, that sounds like you might have pinched the phrenic nerve in your neck. I don't know why my right diaphragm doesn't work properly all the time, but I suspect it's twofold...and one of the causes is the nerve being pinched in the neck area. I have found that when it suddenly gets worse, there is a horizontal groove across the left side of my neck, up reasonably high. I rub a firm tight circle or three, right up hard against the left edge of the spine, then do a very firm flick sideways, out to the left. Then I raise my chin slowly, then suddenly pull it in tight, which stretches the neck, providing a bit of traction. It doesn't always work or work immediately, but it helps often enough to get me past the first few minutes of the sudden onslaught of not breathing properly. The other thing that helps me is to place my hands across both diaphragms, and breathe slowly, focusing on making them both work. I think I have a 'glue plug' or something in the middle of the right one, because I think mine started one day when I lay on the floor on my back to do some physic exercise, and I felt a very sharp painful tearing in that spot and of course I couldn't breathe for a minute or so. The pain eventually went away after a couple of weeks and I thought nothing of it until I got a cough that wouldn't go away for 4 months, and the doctors kept just giving me cough medicine for it. Eventually I got to see my own doctor (he's usually too busy for me to see him in emergencies), and I mentioned on the way out the door, I wonder if I should see someone about my asthma. 'Do you have asthma? I didn't know'...so he did a breathing test and was horrified by the results! I was sent to the hospital respiratory surgeon, but he didn't want to know and dismissed me...and it hasn't been followed up for 3 years now. But that's ok, because there's nothing they can do, short of surgery, and I don't think that's really relevant for me because I'm ok-ish most of the time. One thing that really gave me peace of mind was to purchase a little finger Pulse Oximeter off the internet. Didn't cost much, but showed me that when the diaphragm kicks and stops working almost completely and I feel like I'm gasping for air, my oxygen levels actually go UP to 98% or 99% for a while, because my other chest muscles kick in. I just wait for a minute or two until everything calms down, then go on with what I was doing. I used to freak out every time this happened...I certainly did not expect that kind of reaction, but it is very reassuring.
Hi everyone. Just reading all your posts. I was dx with bilateral hemidiaphragm paralysis on right side last week. Saw the x ray and indeed the right diaphragm muscle is elevated under right lung. Been having problems breathing similar to all of you- on exertion, lying down, putting shoes on, bending over, standing, sitting (you get the idea!) Anyway, I was told mine was from a damaged phrenic nerve
from shingles back in July. Anyone out there have this situation from shingles and any outcomes? Appreciate any info. DianeL.