Anyone with diaphragm paralysis?

[Kennium]

Is there anyone else out there suffering from paralyzed diaphragms?
If so, what has helped you?
I have bilateral diaphragmatic paralysis, sleep apnea, and enlarged heart, small lungs, and I retain carbon dioxide which causes migraine headaches.
Is there anyone else suffering from the same symptoms?
What have they done for you?

[Plymoth]

Hi, I just read your post re: paralyzed diaphragms. I have only my left side paralyzed. I also have sleep apnea. My CPAP helps me to sleep, otherwise I wouldn't be able to sleep on my back or my right side. Except for the CPAP, they tell me there isn't much they can do for this condition.  I've been told that the surgery to tack down the diaphragm isn't very  effective.  I may "qualify" for oxygen to use when I exert myself. Hope this info helps. I'm on here looking for answer, also. Good luck and take care.

[paintflowers]

I just had the laparoscopy plication surgery and it worked! I no longer need oxygen, I can sleep at night. My oxygen levels are usually 98-96 unless I really walk too fast or exert myself too much. I had this done Jan. 2018 at NYC Presbyterian Hospital -Dr. Mark Ginsburg, Thoracic surgeon. I took me 3 years and much frustration looking for help. I am 85 years old and feel so much better.

[paintflowers]

Update for me. It's been a year since the surgery and I am not 100% of what I used to be, but certainly so much better than before the surgery. My oxygen levels at rest are 98-97. If I exert myself too fast they drop down but recover so much better. Not certain how this all happened to me other than having my neck manipulated by the chiropractor. Can't figure how the phrenic nerve just up and died.

[MrTaft]

Hi I have bilateral diaphragm paralysis and I am on a BYPAP too. I have been suffering with this not a very long time. I was diagnosed in April of 2011. I now am being sent to The Cleveland Clinic and dont know what to expect. Are you depressed and frustrated like I am? Has everything you enjoy doing taken away from you? I met my wife in 2007 at a round and square dance and we have been dancing ever since. Well up till March when I started to get sick. Now I cant walk far had to retire on Disability and cant get around like I used to... Let me know how you are dealing with this issue!!

[Kkiesksr]

Not dealing well. Fatigue leading to depression gets me down. Hoping for hope here

[Juleshafer]

My husband, at time BDP diagnosis was 38 yrs old, 2014, healthy male and diagnosed with no cause, no cure only BIPAP to help with surpine position. Now 41yrs old condition not improved. He's been seen at Cleveland clinic by Dr Aboussain. Our quality of life has changed dramatically but he maintains a positive attitude.  Would like to maintain dialogue with you as resources are minimal

[Juleshafer]

My husband, at time BDP diagnosis was 38 yrs old, 2014, healthy male and diagnosed with no cause, no cure only BIPAP to help with surpine position. Now 41yrs old condition not improved. He's been seen at Cleveland clinic by Dr Aboussain. Our quality of life has changed dramatically but he maintains a positive attitude.  Would like to maintain dialogue with you as resources are minimal

[29ford]

Their is also the pacemaker sugery that is what I am going for, I have found the cooler the air the deeperand better I can breath. Mine happened in 2/5/21 after sugery on back of neck

[Kennium]

"Are you depressed and frustrated like I am?"
YES, but I'm also determined to find a way to battle this thing.

"Has everything you enjoy doing taken away from you?"

YES, I was a professional musician for over 30 years, and now I can't perform anymore. I also worked as an AV technician, traveled all over the country and I loved it.  I too had to retire on Disability. Now I'm broke.

My situation seems to be getting worse. On top of the sleep problems and difficulty breathing, I now get terrible migraine headaches every morning. The doctors do nothing for me, and I mean NOTHING.
So I'm gonna try to find out as much as I can and be my own doctor. I need to talk to anyone else who has this problem and exchange information. I need to know how this thing progresses, and what works for others.  Please share your info. - Kenny

[Juleshafer]

My husband, at time BDP diagnosis was 38 yrs old, 2014, healthy male and diagnosed with no cause, no cure only BIPAP to help with surpine position. Now 41yrs old condition not improved. He's been seen at Cleveland clinic by Dr Aboussain. Our quality of life has changed dramatically but he maintains a positive attitude.  Would like to maintain dialogue with you as resources are minimal

[paintflowers]

paintflowers 1 min
I just had the laparoscopy plication surgery and it worked! I no longer need oxygen, I can sleep at night. My oxygen levels are usually 98-96 unless I really walk too fast or exert myself too much. I had this done Jan. 2018 at NYC Presbyterian Hospital -Dr. Mark Ginsburg, Thoracic surgeon. I took me 3 years and much frustration looking for help. I am 85 years old and feel so much better.

[MsLindaCarter]

I am Linda and was just diagnosed with left diaphragm paralysis  after having right shoulder surgery dec 1 and ended up with broncisios and pneumonia on jan 23 and then in the hospital jan 31 to feb 12, 2012.
Was diagnosed with sleep apnea about 4 years ago.  Use my CPAP daily and am now on Oxygen to keep my lung from shuting down or collaping.  Also doing Pulmonary Rehab 2 days a week. I am very active teaching school as a sub teacher, teaching CERT for FEMA and for the Fire Department, and run a 501 c 3 No Person Left Behind teaching  disaster preparedness for all.   Plus being my own doctor to get what i need to be active and not on a ventalator which is out of the question for me.  Scheduled to get an EMG of the Phrenic nerve as the University of Florida Shands Hospital in the next 30 days if things work out then. Results and we go from their.  

As i see it, this is process that a lot of people are getting and there are no answers....  seems like we need to start all pushing for some and getting help for this life threatening problem.

ms linda carter

[harryccg]

I had a right reverse shoulder replacement in May 2011 and 2 days after  leaving the hospital I had dyspena (breathing dificutly) and latter found that my right diaphragm was paralyze. after seeing pulumary DR. they told me I just had to live with it. I also found out that I had sleep apnea. and I am currently using CPAP (works great). By Dec 2011 the breathing was causing issues at my job I was refered to a Thoracic Surgeon. He told me he could help with a Hemidiaphragm plication. After the surgery i was able to breath much easer (they also reinflated the right lung). I still have problems with carring any kind of weight while walking, and extreme physical activity and swimming, but I can now sleep on my back and tie my shoes and ride a bike. what I found most effective is that is helped releave stress on the lower part of my heart.

[capnkent939]

I had right diapragm paralysed after left shoulder surgery.  No good answers.  no sleep apnea.  Limited ability to exert myself - went from an active 53 year old to a passive old guy. Seems to slowly be getting worse... they just keep wanting more tests & money...

[ted733]

Have left diaphragm paralysis and sleep apnea. As understood by me, if the right diaphragm goes, I go. Asked my VA doctor about plication, and he referred me to a pulmonologist. When I showed up, the "pulmonologist" was a physician's assistant. I am severely short of breath on exertion, and Thursday I have an appointment for an echocardiogram. If that goes well, going to push my Primary for another pulmonology appointment. I'll try to keep you posted on whatever happens.

[aimee77391]

I was diagnosed with left sided diaphram paralysis after open heart surgery to repair a tricuspid valve.  I also had a heart transplant in May 2007.  Im suffering from no sleep.  Having trouble with nights and cant seem to get used to the bypap.  If no improvement soon have to see about surgery.   Ughhhh!

[breathless56]

I just received the diagnosis of right diaphragm paralysis today after months of doctors just telling me I was short of breath because I was fat.  My insurance changed July 1 and I finally got an appt with a pulmonologist 10 days ago.  He said he thought it was diaphragm paralysis after a 10 min. exam.  The sniff test and pulmonary upright and supine studies I had yesterday confirmed it.  A nurse called me to tell me the diagnosis.  I tried to ask questions, but she didn't have answers except to say the dr said I was not a surgical candidate.  They told me treatment was CPAP, which I've used for 9 years, and exertion as tolerated.  When I walk from handicapped parking into a store, I'm so out of breath I get asked if I need an ambulance.  This week I had 2 spells where I nearly fainted from shortness of breath.  I'm not happy with a nurse telling me there's no treatment.  I asked if it would get better or worse and the nurse told me it would not get better, but would not comment on whether it would get worse or a prognosis.  I'm not happy that the doctor chose not to speak to me regarding the diagnosis.  I have questions for which I can't get answers.   I will have an MRI next week to see if something in the cervical spine could be suppressing the function of the frenetic nerve.  I don't know if that means something can be done or not.  The nurse didn't think so.  So, I'm not certain why we're doing the MRI.  I need to know how to help myself.  What websites give reliable info on this condition?  What can I do to improve my quality of life?

[cherich6845]

Did you have difficulty getting your disability.  My husband is.  He can't walk further than 15 feet without huffing and puffing.

[MrTaft]

No I really Did not have trouble getting my Disability. I have NYS Retirement and to get that at 42 years of age under Disability they tell me is a year process and I have it in 4 Months. To get SS Disability I had in 3 Months. I think it had a lot to do with my Doctor's Office. They were on top of things and did not drop the ball on anything. If you are having a lot of trouble I would tell you to get ALL Documents from ALL your Doctors and then contact your local Senater's office for help. You as a Voter and the fact your Husband has this problem is There is a growing issues with Bilateral Diaphragmatic Paralysis and Insurance Companies need to know it. If I can help I will. You might also want to contact a Lawyer cause sometimes that is the only way to get a win with SSD. If you need any more help contact me through my E-Mail ***@**** I will help in anyway I can!

[dillon780]

hai

My dad has recently diagnosed with diaphragm dysfunction , he can't breath if  he lay flat on his back. now docs are telling they can try to find a treatment if they can do MRI scanning ,since he can't lay on his back they cant do MRI  scanning ..
For past 6 months he is sleeping on sitting position ,we tried BIPAP but he is uncomfortable with it .

Do anybody know a way to get his MRI done ...

[JayneCA]

Have been going through this - left side paralysis - for about six months now.  Of course, misdiagnosed initially now have firm confirmation.  One thing NONE of the doctors told me was how to breathe so that it could open my airways.  This nurse calls me monthly due to a cervical surgery I had back in September and offered this suggestion  and IT"S WORKING FOR ME!!!  What she instructed me to do - 20 minutes minimum per day - is breathe through your nose, hold breath for a few moments, then release through your mouth, but purse your lips so that the air doesn't go out quickly, but in a steady stream.  I do this exercise twice a day and my symptoms went from extreme to hardly noticeable!!!  I was having terrible problems walking distance or exerting myself, my speech was visibly impaired because I couldn't breathe at the end of the sentence.  But now my speech patterns are not disrupted so much, can walk a little more, and I can do other things that weeks ago were difficult to do.  I know the paralysis hasn't gone away, but I feel so much better. I hope it works for all of you -- this nurse was a God's sent angel!  Also, go to Cedar-Sinai's web site on the subject. I liked the information they provided.  Hopeful.

[brassplayer]

I was diagnosed with right diaphragm paralysis after a respiratory infection in December which progresses to bronchitis, pneumonia and adult onset asthma. My pulmonologist said nothing could be done and that research is notbeing done because it is "uncommon". My primary care doctor told me to do deep breathing exercises tsee if we can strengthen any muscle that might be left and to slow down the progression. They have me on inhalers and nasal sprays to open the airways and to keep me off oxygen as long as possible. I gave up my trumpet and french horn about 8 years ago due to lack of air. I gave up the church choir 3 years ago for the same reason. I am leading a fairly normal life except for getting winded. Bending over is the most difficult thing. I am just trying to enjoy as much of life as I can.

[scrozier]

I had a paralyzed left hemidiaphragm. About a year and a half ago, I found a surgeon in NJ that does phrenic nerve repair. I had the surgery, and my phrenic nerve is completely back to normal. I wrote about it here: http://amillionbetterthings.com/2012/02/08/how-to-hack-your-health/

[paintflowers]

I tried to get that surgery but was rejected because of my age. So I just had laparoscopy plication to tie down the diaphragm. It was successful so at least my breathing is better than it was. I was so hoping to have Dr. Kaufman do the phrenic nerve repair, but the neurologist said the nerve had a "virus" (?).

[lindyloo888]

hi there im new and ive been told i have a paralized diaphragm have problems breathing on exusion find it hard to breath specially lying down it seams as though there is something that blocks my airways and have a very weak left arm .and i have had a thorasic outlet decompresion  and i too wake up with headache nearly every morning its worse when i wake up and get up and move about.

[lifeonhold]

Have you had any luck?  I has surgery to my neck and now my diaphram is paralzed my lung is 25-30 % collapsed.  I can't do anything like bending over walking fast, lifting, singing.  What do I do?

Please help
PR

[Clay351]

What I first would tell you from my experiment with this type if medical issue is first you need to talk to your Lung Doctor.... If this was caused from a Surgery there might be a chance it will heal. But educate yourself on Diaphragm Paralysis! I have Bilateral Diaphragmatic Paralysis. My issue is related to an Work Injury... Make sure you listen to your Doctor if he doesn't know about this find one. I don't know where you are from but I live south of Rochester, NY my Lung Doctor Dr. Kalley is the one that knew what I had right from the beginning how ever it to a long time with all testing for us to realize what had happen to me.. Keep your Chin up and you will have to figure what you can do and what you can't do. I also would tell you I made a trip to The Cleveland Clinic in Cleveland, OH the Doctor's they know there stuff there. But because Dr. Kalley knew so much about this type of Medical Condition they told me that the Doctor's in OH would be doing the same thing that The Doctor's in Rochester are doing... God Bless you and you can always come here and talk to people like myself that has been dealing with this issue for a long time now...

[paintflowers]

If my now you are still having a problem, contact Dr. Mark Ginsburg at the NY Presbyterian Hosp. in NYC. He is a Thoracic Surgeon and did a laparoscopic plication of my left diaphragm last year. So much better now.

[semetofixit]

Had nasal surgery last Feb, flu then paralyzed right hemisphere,  no problems at night but never feel rested. Typical dr recommendations a..some help. Can I qualify for disability? Haven't felt normal since.

[beckyGH]

I have a bilateral paralysis diagnosed last Christmas I am only 43 with 2 young kid. sleep with a cpap s machine but cant tie shoes bend or walk more than 500m. Not on disabilty as can still work (am a blogger) but they wont give me disabled parking permit. I want more advise want to get better doctor basically tells me to live with it Am in UK

[Juleshafer]

My husband, at time BDP diagnosis was 38 yrs old, 2014, healthy male and diagnosed with no cause, no cure only BIPAP to help with surpine position. Now 41yrs old condition not improved. He's been seen at Cleveland clinic by Dr Aboussain. Our quality of life has changed dramatically but he maintains a positive attitude.  Would like to maintain dialogue with you as resources are minimal

[paintflowers]

Dr. Mark Ginsburg, NY Presbyterian Hospital performs a plication operation to tie down the paralyzed diaphragm. I had the laparoscopy surgery January 2018 and it has improved my breathing. Do not need oxygen and can sleep without elevation. Dr. Ginsburg is a thoracic surgeon and this is his speciality.

[STLHELP]

Hello, my husband had a right paralyzed diaphragm.  They went in June 4 and did surgery.  They shored up the right diaphragm, did a peel of the right lung and went down the throat to check things out.  Surgery went pretty well.  But, now here it is six months later and he is worse than ever.  He can't breath well, can't bend over to tie his shoes, his belly is big and hard and swollen.  He cannot eat big meals because it makes him miserable.  He gets these catches or sighs when he breaths several times a day.  Went back to the .surgeon last week and he says this is normal.  He said my husband has anxiety and prescribed Zanaz which is bull, gave him another inhaler, he already uses symbicort.  We are at a loss.  His Ct just showed that his liver is enlarged now, and a whole list of other things.  Does anyone have any advice????

[Zafarali]

There are upright MRI SCANNERS. I have the same and just had the upright scan in London. They are available in most countries. Good luck

[rickyhauck]

Next Generation MRI does the MRI sitting up in a chair. I live in Columbia,MD they may have service in your state. www.NEXTGENERATIONMRI.COM

[Stroud5393]

Hello I'm curious how do you know you have a paralyzed diaphragm because my doctor can't figure why I'm not breathing good I've had all kinds of tests xrays lung function test echocardiogram and a bunch of blood test I mean could I have a weak diaphragm?

[29ford]

Most Doctors dont have brains enough to figure it out had to do it on my own then made them run the test for it. Its called the sniff test