Paralyzed Diaphragm

No illness of late. Had right shoulder laminectomy couple of months ago. Recovery going well. Doc appointment next Wednesday. Thanks for group contacts.
One of many questions is about solving the lung issue.

My husband was also diagnosed recently with a R paralyzed diaphragm. He is on constant O2 and uses a nebulizer. Physically he is very limited, he’s always struggling for his next breath. No one in our area seems very interested in his case I believe because he is 72 but we have always been very active and I believe everyone deserves a better quality of life.

@topjob67 There are caring knowledgable doctors out there who can help your husband, irrespective of his age. It's just a matter of finding them, which can be a challenge. Because a paralyzed diaphragm is so rare, not a lot of doctors know about it or how to treat it. If you aren't finding them locally, perhaps you could try a larger medical center like the Mayo Clinic or one associated with a university. Thoracic surgeons seem to be more familiar with treating it than even pulmonologists. I did a videoconference with Dr. Mark Ginsburg, who is director of the Diaphragm Center at Columbia University in New York. He is the leading expert in the country and perhaps world on paralyzed diaphragms. I didn't need a referral from a doctor, and Medicare covered the cost of a second opinion. I'm 75, and he recommended a treatment plan for me that is going to enhance my quality of life. I hope your husband finds the care he needs to do the same.

Thank you for responding to my comment. We have come to the conclusion that we are going to have to search other physicians out of our area, although fighting with insurance companies is no picnic it is something that has to be done. I just get upset watching my husband struggling to breath when his drs truly don’t know what to do with him. Thanks again

@topjob67 It must be terrible watching your husband struggling to breath. He's really lucky to have you in his corner trying to find help for him. I feel as though my last post wasn't very helpful; so I wanted to make a couple of concrete suggestions on things you could do to find a knowledgeable pulmonologist and thoracic surgery...hopefully near you. If your husband will need surgery to hold his paralyzed diaphragm in place to facilitate his breathing, it will be done by a thoracic surgeon, hopefully one who specializes in minimally invasive thoracic surgery using robots. They are located at bigger hospitals and medical centers. US News rates hospitals and speciality departments like pulmonology. You could do a google search on top hospitals in *** (insert your state) in pulmonology and lung surgery. Or a google search for best thoracic surgeons who do minimally invasive chest surgery in *** (insert your state). Or a google search on best pulmonologists in *** (insert your state). Another option is join the facebook group for people with paralyzed diaphragms (do a google search to find the link) and ask for recommendations for both pulmonologists and thoracic surgeons who do plication surgery near you. There are over 830 members with paralyzed diaphragms from all over the states and world who are more than willing to share the names of doctors who have helped them. I don't know if any are near you, but it's worth a shot. They will also answer specific questions you might have about paralyzed diaphragms, provide incredible support for you, and suggest things you might do to make your husband more comfortable while you are trying to find the best doctors for him. I really hope it helps to know you aren't alone in this really daunting task...members on Mayo Connect are here to help you and members on the facebook group will be too, if you're interested in joining. Please keep us posted! I'll be thinking about you.

I too would more info on possible corrective procedures. Good luck to all of us.

John there are several diseases that could cause this : Motor Neuron Diseases, Diabetes causes nerve damage to many functions of body ex- swallowing, breathing, bladder control and bowel control.... Also a very RARE disease that effects the diaphragm and breathing is "Stiff Person Syndrome" and it effects the muscles in the rib cage....I know because I have it....Drs do not think to test for this or (suspect) this disease because only 3 people in a MILLION will get diagnosed....it is listed under NORD- Nat'l Organization Of Rare Diseases

Met with pulmonologist Tuesday. I have a paralyzed right diaphragm “squashing” first and second lobes of right lung. Seems to it will be a permanent feature of my aging body!!!
Diagnosis also indicates COPD and some asthma.
Going for SNIFF test next week.
Medications include Trelegy and Albuterol. First dose of Trelegy seems to work. Albuterol will help with in between capacity shortages.
Doing well with accepting my physical condition.
Will keep you all updated.

Mary Massery did more good for me than anything else I tried. She helped.

I was int the hospital with a blood clot that went thru my lungs !
After a week in the hospital, I was moved to another hospital for physical therapy !
One night I was bored, so I walked to the nurses station and I almost didn't make it back to my room because I couldn't breathe !
The next day the doctor said I had asthma, but he was so wrong and after another week went by, I found out that the left side of diaphragm was paralyzed !!
I had surgery to put stitches across it !
I've been battling with shortness of breath ever since !
I've made numerous trips to the ER because I thought that I was taking my last breath ! FRIGHTENED !!
Donald Goss