Back in March, I was taken to the ER with shooting pains going up and down my arm when I extended them.They at first thought it was heart attack, lung clots, etc.
Turns out a fever I had a few days earlier, then the day I went into the hospital, attacked my spine and damaged my Phrenic nerve and Brachial-Plexus. Appears the virus has damaged the nerve that operates the diaphrams. Is any one out there that can offer me a clue as to what I can do for myself, or has had a similar situation.
I am getting annoyed at the constant back pain, the Bi-Pap device I have to use at night and the loss of energy and strength.
I had surgery in Oct.2000 to have a tumor removed from my spine.They told me that during the surgery that I had aspirated, at first they thought that I shot a clot.Unfortunately it left me with a paralyzed diaphram on the left side. I am now on oxygen 24 hours a day and it has been this way since the surgery,I keep hoping that it will get better,but it really isn't going to get much better now I am trying to learn to live with this,needless to say I get very depressed at times. I am a 45 yr.old woman who never had breathing problems prior to this.If there is anyone out there that is going through a similar problem I would love to hear how you are copeing with this. Thanks
Hi Sherryann & Kingpin,
After about a year of dealing with shortness of breath I finally went to the Dr. to find out what the problem is. The doctor assured me it was asthma. After dealing with this for as long as I had, I just had a gut feeling that this wasn't asthma. She sent me home with inhalers. I asked for a chest xray just to rule out any thoughts of a mass or tumor putting pressure on my lungs. Never did the thought that something was wrong with my diaphragm cross my mind. Next day the chest xray comes back and the doctor says..there's a problem with your diaphragm...what happened to the asthma?, were my thoughts. Guess I'm bitter still..probably more at my self for not having this looked at sooner. So after a CT scan, MRI, fluroscope, it is definitely paralysis of my right diaphragm but as of yet we've found no reason. Have had no surgeries to damage the nerve. No infections that we are aware of that could be attacking the nerve. Nothing showed up on the MRI of the cervical spine. My Dr has told me to call the Mayo Clinic In Jacksonville Florida. I did today and they do phrenic nerve stimulation so I guess we're Jacksonville bound next. Dont know how much if at all this will help your situation as I dont know the specifics of your situation. I am still functioning fine, with the exception of the shortness of breath, can't sleep flat on my back (feel breathless) crouching postions (pulling weeds in the flower bed, pulling dog toys out from under the bed) take my breath away and make me wheeze. I have also noticed that I can't eat as much as I used to be able to. Maybe thats a good aspect of this whole mess I've found myself in. I may not be able to breath but by dog I'll get thin. I have to laugh at this point, if I dont, I'm so scared of whats next I'll loose my mind. Might just loose it anyway....Thanks for listening....
This seems to be an old thread, but I hope some of you that did the above posting are still checking.
About 5 months ago, I went into the hospital with right side pain. After 2 days of x-rays and CT's, it was determined that it was due to my gallbladder. The surgeon removed the gallbladder but there was mention that I could possibly have phenomena. I had had a cacky type cough for about 4 months.
The story goes as follows: I was sent home and I just couldn't recover. After 14 days, my primary care doctor called me and said that he and a radiologist was looking at an x-ray and that I needed to return to the hospital. It turned out to be that I had a very bad infection in my right lung....strep. I ended up with two chest tubes. A surgeon had tried to insert them with a local and cut on me three times before deciding that I would have to go to surgery to have them placed. After surgery, I ended up with a collapsed lung and was on a ventilator and in ICU for three days and then a total of 14 days in the hospital with the chest tubes. I felt like someone had ripped my back & right breast apart with barbed wire when they were removed. One had been placed through the back on around under my arm pit and then into my right breast and then into the lung.
I have continued to be very sore in all these areas since then. I didn't really feel as though anything was wrong until I returned to work after a 3 month period. I immediately started having shortness of breath and chest pain in my right lung area.
I just went to the lung specialist this past week and he wanted to rule out my heart before going any further. I still felt as though the pain and discomfort was coming from my right lung area, but he insisted that I have a stress test next week. But, before I left the doctor looked at my chest x-ray from a month before and called me back as I was leaving. I had another chest x-ray and then he compared them. He came back into the room and told me that the scarring from the infection had gotten lighter and then said that my diaphragm was out of place and was too high. Since I'm not a medical person, I didn't ask the questions that I should have, so I have been surfing the web to try and locate any information that I could about the diaphragm. After reading this about a paralyzed diaphragm, this seems like what has happened to me. If anyone is out there, would you care to reply. Deep down in my right lung area hurts very bad. Sometimes when it gets to a certain point, I have to hold the area to try to obtain some type of comfort. I can't sleep on my back. I'm still on for the stress test next week, but I just know that the pain is coming from the diaphragm. Is there any hope for this if it should turn out to be a paralyzed diaphragm?
I've been experiencing similar problems as those mentioned above for the last couple years. Mostly at night as I wake up gasping for breathe. I feel like the right side of my espophogus is "frozen". The only thing that has gotten me to sleep is Xanax. It seems to relax everything. My symptoms seem to come and go. I can have good weeks then...BAM...I'm sucking wind again. Nighttime is brutal as I try to get to sleep. What's funny is that I hiccup when clear my throat and I seem to lose all control of my esophogus. Burping becomes impossible. It can sometimes be very uncomfortable...even painful. I too feel like I'm going crazy at times. I don't know what to do. No one seems to understand what I'm going through. I'm 40 years old. Well, my Xanax is kicking in and I'm gonna try to sleep...wish me luck!
It's somewhat comforting to know I am not alone. I started experiencing shortness of breath in early Feb. First I thought it was a result of stress as I had to eliminate the only other job in my dept. and I was taking guardianship of my father who has a brain disease. I later thought it was a heart attack. After that was ruled out with a stress test that almost killed me, I told me doctor if my heart was O.K., then it must be my lungs, as I could not even climb one flight of stairs without becoming totally exhausted. (It was now late April.) She did a simple test in her office where I blew in a tube and she could tell it was my diaphram. A CAT scan showed I had an elevated left hemi diaphragm. Pulmonary function tests showed I had 35% total lung capacity.
I under went diaphragm plication on June 8th and hate to say I don't think I feel any better than before the surgery. Sleeping is definately worse. I bought a wedge pillow which helps my breathing, but it is very hard and uncomfortable. I wake up every 2 hours or so. It's very difficult to breathe laying on my back. I am seeing the doctor again tomorrow. Hopefully he can figure out why I don't feel any better. I am very depressed after undergoing fairly major surgery and still feeling horrible.
If anyone else out there has had this surgery, please let me know how you felt afterwards. I would really appreciate feedback. Thank you.
I was just recently diagnosed with what they call, "eventration of the right hemidiaphragm", which from what I read is the same as paralyzed diaphragm, and elevated diaphragm. It sucks, doesn't it? I have hypothyroid, and I can't help but think it lead me to this somehow.
The hypothyroid has not been good since I started meds 2 years ago...I've had a hard time getting meds just right, and have had hypo levels for too long. What happens is that makes your muscles really weak. I had noticed for a whole year that my diaphragm felt like it wasn't working. Sometimes it even felt numb, just dead in there. I would have to force myself to take deep breaths. So they found it on the lung xray, as I have been short of breath too for all of this time. It used to be mild, but in late April became more severe. The radiologists xray report says "probable COPD", oh... and "hyperinflated lungs". I go back for a PFT pretty soon, and then to see a pulmonologist. I'm scared.
I don't have any problems breathing while lying down. The other problems I have is, wearing bras hurt sometimes, (maybe the hyperinflated lungs??), and the SOB. The weird thing is, I was having horrible muscle spasms on my chest muscles, upper back, even moving into my neck area. Well, My Dr. gave me Klonopin for that, and my breathing improved SO much! I wonder how much of this is anxiety too. Yet, I do know there is a problem with my lungs as well.
Does your diaphragm ever feel numb, like when your foot falls asleep? Does it ever hurt in that area? Do you feel like you have to eat small meals now, or it causes discomfort to eat larger meals? (Going out to eat is a drag now) Do you cough?
Lucy, I'm so sorry that your surgery wasn't a success, but in the searches I've done on this, that seems to be common...unless it's done on infants. I'm wondering if the diaphragm can be strengthened through exercise...yoga perhaps?
Sorry to hear you have so many problems. I went back to my surgeon yesterday and he gave me an anitbiotic to hopefully get rid of trapped air behind my diaphragm that may be causing some of my discomfort.
I too am taking Klonopin which was given to me when I thought this was all stress related. I just take it at night and it does help me sleep, but I don't think it does anything for my breathing as my husband says I breathe very shallow at night. The good news is I don't snore any more, but the bad news is that's because I am not getting much oxegen.
My diaphragm has never felt numb or hurt - I just can't breathe normally. I am eating a little less which is good as I am quite a bit over weight. Now that I can't really exercise, I really have to work on eating less, so that is a good thing.
I almot never cough - once in a while my throat dries up and I cough until I get a drink of water, but that's about it.
I went back to work yesterday after 4 weeks off due to the surgery. It at least takes my mind off how lousy I feel. As Mick Jaeger said "What I drag it is getting old." (I'm almost 54.) Hope you get some relief soon.
You are funny...at least you still have a sense of humor! (The MJ quote..I loved that song, when I was young!) I'm 50, btw.
Thank you so much for answering my questions too.
I hope that the medication your Dr. gave you will help with the trapped air, behind your diaphragm. What I was wondering, was how is an antibiotic going to do that? Well, I guess they know... I just hope it works for you!
Last night while I was on here, (really late, as I'm worrying so much about it), I did a search on this board concerning this condition. You can just type "diaphragm" in the seach box, (without the quotation marks), and quite a few posts came up. Not sure it was such a good idea though to read all of those posts! SO many ppl with the same problems, and horrible things occuring as a result of it. Some with this condition are on oxygen, some have developed lung disease as a result of this. There was even a gal, (she sounded like she was younger) who got emphysema and cirrhosis of the liver! I just sat here and cried! Everything I'm reading about it doesn't sound good. I have not read one encouraging thing yet. So please, if there's anyone out there reading this with something encouraging to say, PLEASE let us know!
Lucy, you said that you cannot exercise any longer? That's making me wonder if I really do have it, (I suppose I do, since they saw it on an xray, and that is how it's usually diagnosed). I can still take walks, and I can walk for about an hour straight. My speed is a little slower than before though. Maybe my case isn't quite so bad? I wonder if it gets worse, maybe it elevates more in time?
You said that you have some discomfort...is it in your back? My diaphragm feels uncomfortable at times too. Just not constant.
What strength Klonopin do you take, Lucy? I take 0.5 mg, and it has really helped. But I do still have issues with breathing. Do you get any chest aches or discomfort? Sorry for all the questions again, Lucy...it just feels good to talk to someone going through the same.Do they have, or do you have any idea what caused you to get this? I read it can be caused by a virus or bacteria, a trauma, [such as a car accident], and damage done to the phrenic nerve during surgery.
Well, you hang in there Lucy, and thank you for replying. Hope to hear from you again.
Good to hear from you. I returned to work July 5th after being off 4 weeks for the surgery, so I have been too busy to check back on the board. I will try to answer all of your questions.
First of all, my daughter's boyfriend explained the "air" was probably really "gas" that formed during surgery if some bacteria got in my which is very common and mixed with something - I don't remember - biology was not my strong suit. I finished the Rx yesterday and feel a little better, but not a lot. I made an appointment with the Pulmonologist who I saw once to see if there is anything he can do about my sleeping problem. Maybe if I got a good night's sleep, I would have more energy and feel much better. That's great you can walk so far - I can do about a half mile. Remember, my diaphragm is no longer elevated, but sewed in place down below. Only the right side moves up and down. Prior to the surgery I was told I had 35% lung capacity - has yours been measured?
After what you said you found on the net about our problem, I don't think I want to know any more! My mother always said "What I don't know can't hurt me." I am thinking about asking is sleeping with oxegen will help, but I sure hope I don't end up carrying a tank around with me!
My discomfort is when I lay down, or sometimes when I first get in the car. This is new since the surgery - changing positons can be difficult.
My Konopin is the same dose as yours.
As far as the cause goes, the doctors think a virus attacked my phrenic nerve. It's weird, my mother had polio in the early 50's and her lungs were paralyzed. Somewhere I read our problem can be caused by a virus including polio. Obviously I don't have polio, but do now have something in common with my mother who died at age 46. Her respiratory system was damaged so bad by polio, she got pneumonia one winter and died in her sleep at home from lack of oxegen - very scary for me.
I'm sorry I took so long to reply. Thank you for answering my questions.
No, I haven't had a PFT done yet, I had an appt., but chickened out, and cancelled it. Guess I'm just not ready for any more bad news. Now I'm scheduled for one on Aug. 5, and I guess I'll just go and get it over with. Then on to a Pulmo.
Like your mother, my mom died of lung disease too, at 56. It was autoimmune. (Idiopathic Pulmonary Fibrosis) That's why I'm so freaked out and scared. So I know where you're coming from with your fear too, Lucy.
The good news is, my Dr. found out that my thyroid levels were low, (bad) and upped my medication a few weeks back, and I've noticed a real (good) improvement in my breathing, and my diaphragm feels so much better. It feels like it's actually working again! (Let's hope!) I've seen other ppl on the thyroid boards, that said their diaphragms feel weak, like they have to try extra hard to take a deep breath. Now all I know is the xray/radiologist report said that I had, "eventration of the right hemidiaphragm". I don't know if that actually means my diaphragm is paralyzed? Anyone know? I thought I read somewhere that there were other tests to see if the phrenic nerve is dead. It just feels like it's moving/working again. All I know is, I DO feel better...not 100%, but much better.
I'm glad to see that you are still able to work Lucy. I hope the Dr. can help you with your sleeping problem.
What happens when you change positions, Lucy? Discomfort? I haven't noticed anything like that. Sometimes my bra 'hurts', right along the braline, under my breasts, and I get relief when I take it off.
How are you doing since I last heard from you? I hope you are doing well.
God bless you...
As I Have Read All The Letters, I Find That They Are All From Women. My Husband Has The Same As You Have, And Is On A Bi-pap Which Helps Him A Lot. He Is On Oxygen 24 Hours A Day. This Just Come On Him Overnight. Finally Mayo Clinic Came Up With The Right Hemidiaphragm Collapsed. He Is 75, And We Don't Know What Is In Order For Us As Yet. Have To Go Back To Mayo In Sept. I Am Hoping They Can Give Us Some More Answers. It Sounds Like This Is Going To Be For The Rest Of His Life, As He Has Heart Problems Too. But No One Will Give Us Answers.
If Anyone Can Help With Any Suggestions, Please Let Us Know
Last edited by elaine boiko; 08-16-2005 at 07:23 PM.
I'm sorry, I don't know very much about it either, I'm afraid. I've done a search on "eventration of right hemidiaphragm", and I was dissappointed that little info came up about it, and even the info that DID come up, seemed as if any info they do have about it is pretty vague. I did read that it is a rare condition. I'm starting to wonder if I do indeed have it. I have hypothyroid, and was undertreated for so long, and now that I'm on a higher dose, my symptoms are for the most part gone...my shortness of breath, diaphragm feeling weak, etc., all is feeling about 98% normal again. I did have a PFT's done recently, and haven't got the results back as yet. I hope that I don't have the above, as it sounds like it's not very good. I guess you can have a mild or a severe case of it.
I'm sorry your husband is having such a bad time, Elaine. Do you mean that his lung collapsed?
with prayers for you...
I am sorry to hear about your husband. All I can say is I do not recommend diapham plication surgery. I am 53 years old and had the surgery June 8. Within 7 weeks many of the stitches had come out and my lung capacity remains at 35% - same as it was before surgery. I am seeing a new doctor this week who specializes in spinal therapy. The docs think mine was caused by a virus which attacked my phrenc nerve. I'm not pinning any real hope on this doctor, but don't know what else to do. I tried a v-pap machine and could not get a decent night's sleep with it on and did not feel it did any real good so I have given it up. Good luck to you and your husband.