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1293512 tn?1315339860

Anyone with diaphragm paralysis?

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?
38 Responses
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Avatar universal
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
Helpful - 2
2 Comments
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
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.
Avatar universal
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/
Helpful - 1
1 Comments
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" (?).
Avatar universal
Hi Linda, I had right wrist surgery on no. 16,
2018 I had to stay in the hosp two week days and sent home on oxygen. I have been on oxygen since the surgery. Through the nerve blocker put in by the anastegolgist served by right phrenic  nerve. The hosp discussed Plication Surgery with a possible 20-30% increase in my right lung,which they told me there may be a chance where I .might not get percentage they mentioned. Look up "Pacing Diaphragm Surgery". I happen to live in one of the cities that provide this surgery. Of course not the hosp that severed my right phrenic nerve. Good Luck.
I am scheduled for the surgery in May, with a probability of 70 - 80% use of my right diaphragm. Many doctors don't get it. There's a common theme with docs that one lung is ok. A simple X-Ray will let you see if you have an elevated diaphragm.   Mary
Helpful - 0
Avatar universal
As best as I can determine, I severed or injured my right phrenic nerve as a result of a nasty fall I took in April 2015 (at age 60) which also resulted in a broken leg, lots of bruises, a lump on the back of my head and a neck injury.

I have had two pulmonary function tests (first, I was at 31% pulmonary function, and the second, I tested at 29%), the fluoroscopic sniff test, multiple chest x-rays and a CT scan or two. (Perhaps even an MRI, I can't remember!) I also had a sleep study done in fall 2015.  They said that, while sleeping, I stopped breathing, on average, some 62 times per hour.  That’s more than once a minute!

My breathing is labored, then difficult, then panic-inducing, upon exertion.  No meaningful exercising is possible now; walking and everyday physical deeds are very limited in general. Bending over at the waist and breathing is the equivalent of trying to breathe underwater--an impossibility.  I tire very quickly, have curtailed most normal activities except for passive ones such as watching TV or using my laptop computer now.  Even with a flu shot, I didn't dare venture out this past winter for deathly fear of contracting the flu or any respiratory illness (cold, bronchitis, pneumonia, etc.).  I was told I could wind up in the hospital on a ventilator.

I was shocked to see that some of you spoke of using inhalers, nebulizers and/or supplemental oxygen.  At the time of both of my pulmonary function tests, I tried using those with ZERO improvement or effect!  So, I have been under the impression that those treatments don’t work for people with a paralyzed diaphragm!  My lungs are completely normal and healthy, it’s a MECHANICAL problem, at least for me, and added oxygen makes no difference!  I was surprised to learn that for at least some people with my condition, those treatments do help!

I am sick of being this physically compromised and am now exploring in a much more aggressive manner the possibility of some surgical procedure to fix what ails me.  I’ll keep you posted on new developments.  In the meantime, my heartfelt prayers and best wishes go out to everyone here suffering from this unenviable condition.
Helpful - 0
Avatar universal
What institutions have you been to?
Helpful - 0
Avatar universal
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
Helpful - 0
1 Comments
Hi I’m 39 year old lady with damaged diaphragm my life too has changed dramatically and can relate completely to your husbands symptoms I use bipap machine at night and am limited in walking bending I also have a onset of swelling upon exertion in between the the breasts level with waist in line with bottom of ribs does your husband look swollen as this goes up and down and I feel it’s the diaphragm swelling on exsertion if  I’m on my feet to long or trying to walk sometimes even short distance if I egnore it a pressure pain begins and when realy bad I vomit .....also eating to much I’m breathless and at my worst am sick does you husband have these symptoms with his diaphragm, several heart operation s caused my elevated diaphragm 10 months ago it began hoping it will fix but reading a lot of people struggling for years .
Avatar universal
I have been diagnosed with right hemi diaphragm paralysis following a right shoulder operation, the nerve block is the culprit, damaged the phrenic nerve.  I have been suffering like the rest of you for the last two years, no one really understands unless this is happening to them.  I use an Auto Bipap machine to sleep with and elevate my head position 20 degrees, this helps a lot with sleeping.  I have been going to the gym and working out, it was very hard at first, but it does get easier.  I still have to control my breathing thru a lot of the exercises but it helps me strengthen my alternate breathing muscles. Breathing exercise help also, in thru the nose and out slowly threw the mouth.  From what I have found, nobody is going to help me with this but me.  There is a Dr Mattew Kaufman at the Institute for Advanced Reconstruction in New Jersey who will repair the damaged phrenic nerve thru grafting.   I read very good things about this approach, if you damaged the nerve thru surgery or accident. I am currently trying to get my insurance company to pay for the operation but they keep saying its experimental.  The best thing I can tell you is to exercise and strengthen your breathing muscles; you will notice a big difference in 6 months.  You also need to use the Bipap (higher presser than the Cpap) at night to clear the CO2 out of your system and keep your lung from collapsing.  I function very well now, but have to use my Bipap around 7 PM for ½ hour on the couch in order to get rid of the CO2 which built up in my system during the day.  Stay strong my friends and help yourself!        
Helpful - 0
Avatar universal
I have had my right diaphragm paralysed for 30 years following a cliff fall whist in the Services. I've still trained all these years but running is obviously difficult, non the less I still do it but not as others would. I have read about phrenic nerve by pass or grafting in the U.S. I'm researching where it would be conducted here in the UK, hence my discovery of this forum.
Helpful - 0
Avatar universal
I have bilateral diaphragm paralysis and increasing difficulties breathing. Weak and short breath on inspiration and expiration and barely sleeping. Are there any exercises can be done at this late stage as now haveimpeinding feeling of doom. Have been told intervention now pointless.  Can anyone help me out.
Helpful - 0
2 Comments
Hi. I came across this site trying to find information regarding my dad health. I think my father has what u have. He is in hospital ICU department. He suffered a respiratory arrest and now is unable to breath properly or without ventilator. Cardiologist and respiratory consultants say this is not the cause of his strange symptoms - seems it's Neurological... I'm interested to hear more about yr symptoms and vice versa. Kind regards
My husband, at time BDP diagnosis was 38 yrs old, 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
Avatar universal
Don't give up!  I too have fatigue but go to the gym and do the treadmill at a slow speed. Got up to a mile without trouble. I am 83 so no hope for any medical solutions. I get depressed and stopped painting for 4 months. Must not let that happen. Sleep has never been that good so there is no difference. I still use the device they give you in the hospital to breath into. I am on a list for pulmonary Rehab to teach me how to breathe from other muscles. Hope that helps. I can't carry heavy things or run so of course had to revamp what I do and what I can't do. Still praying for God to heal me even for a little. My prayers are with you all. May God be with you.
Helpful - 0
1 Comments
I have an update on my condition: It is June 2018 and I had laparoscopy plication Jan. of this year by Dr. Mark Ginsburg, NY Presbyterian Hospital. My breathing has improved. I can do 1- 1/2 miles on treadmill without breathing problems (not a fast speed), I can sleep without oxygen. I can reach 1000 on the spirometer now, so I would recommend this surgery. I believe that God did answer my prayer.
Avatar universal
I have just been diagnosed with left diaphragm paralysis due to phrenic nerve damage from chiropractor. Never realized it until I was short of breath. After going to Pulmonologist, Neurologist, Neuorsurgeon, AND being 83 years old, there is no treatment for me even though I am in good physical shape. What has helped me is getting a Voladyne spirometer and breathing into it 10 times 4 times a day. I started out only getting to 500 and now up to 550 which is not really good but better than it was.  I am an artist and can't even carry my paintings to a show  But I can sleep. At this point I am praying for God to heal me since there are no avenues left for me. Good luck-try the spirometer.
Helpful - 0
Avatar universal
I too have BDP and applying for SSD. Di you ever got yours? Having my hearing with the judge on Wednesday the 16 of Sept 2015. Afraid that she is not familiar with the condition.
Helpful - 0
1 Comments
I''m in the uk,I had a hearing for PIP which I think is similar. It's a no brainer once you sit infront of a Dr I spend 14 hrs a day on a VPAP. My condition is caused by a neurological condition. So have other issues but my main disablity is my breathing. We don't fit into a normal disablity so the standard questions don't count on their own but accumulatively they do.. my other issues may have helped but are mostly to do with my diaphragm. If you have BDP you will know the unseen problems of bowls weight gain , temperature regulation poor concentration eye sight and all the rest of the knock on effects that effect our everyday lives. If you didn't get the ruling appeal...l.
Avatar universal
Sniff test
Helpful - 0
Avatar universal
Dr. Kauffman,  jersey shore hospital, nerve bypass surgery to get your diaphragm working in some candidates.
Helpful - 0
1 Comments
They turned me down because I am 83.
Avatar universal
I am in n.y. Too. May I ask what dr and attorney you used to get your disability? They are killing me. I am 41, nys teachers pension and disability held up because the dr and attorney. Any help would be appreciated! Thanks Chris ***@****
Helpful - 0
Avatar universal
Also I'm a 25 year old male with a history of asthma but I really don't think its that. I have this discomfort in upper center abdomen between ribs and stomach and it feels my airways are closed up... I'm so scared of what it could be I've tried symbicort rescue inhaler allergie pills nothing is helping. Its the worst on exertion
Helpful - 0
Avatar universal
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?
Helpful - 0
1 Comments
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
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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????
Helpful - 0
Avatar universal
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.
Helpful - 0
1851499 tn?1320712037
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...
Helpful - 0
1 Comments
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.
Avatar universal
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
Helpful - 0
Avatar universal
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.
Helpful - 0
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