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?

[Cookis]

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!        

[RoryD]

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.

[tbambo]

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.

[Daddy2016]

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

[Juleshafer]

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

[paintflowers]

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.

[paintflowers]

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.

[paintflowers]

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.

[desch66]

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.

[Charlie_Scotland]

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.