← Return to Mysterious shortness of breath: What has helped you?

Discussion

Mysterious shortness of breath: What has helped you?

Lung Health | Last Active: 1 day ago | Replies (3425)

Comment receiving replies
@nla4625

@Ims4ever I too have a paralyzed diaphragm. It is a rare condition which most primary care physicians and pulmonologists know little to nothing about. Unless you have medical conditions that would keep you from getting treatment for your paralyzed diaphragm, I don't think you aren't getting good advice from your doctors. There are things which you can do about it that will improve your breathing, stamina and quality of life. Did you have the sniff test which determined your diagnosis? I personally didn't have the nerve conduction tests to see if my phrenic nerve was functioning, but people on the facebook page for people with paralyzed diaphragms have. From my understanding, it is not a painful experience; but many had trouble finding a place with qualified people to get it done. I highly recommend you join that facebook group. It has over 800 members now, all of whom are doing or have done the 5 ways there are to deal with a paralyzed diaphragm: 1) do nothing, 2) if your paralyzed diaphragm is due to a recent injury of the phrenic nerve, wait 2-3 years to see if it heals itself and the diaphragm starts working again, 3) install a diaphragm pacemaker -- Dr. Ordners at the University Hospital in Cleveland, 4) have a functioning nerve from your leg grafted onto the non functioning phrenic nerve by Dr Kaufman in New Jersey, and 5) plication surgery being done by many specialized thoracic surgeons at major medical centers around the country. I recommend you find a highly trained thoracic surgeon who specializes in minimally invasive chest surgery using robots who has experience in doing plication surgeries to discuss your options or contact the doctors mentioned above. Most seem to be at larger major medical institutions affiliated with university hospital systems. I'm probably going to have plication surgery later this year or early next year at the diaphragm center at Columbia University in NY. They have some great information on their website. I don't know where you live, but you can get ideas of doctors who are familiar with treating people with paralyzed diaphragms from folks on the facebook page. Many have gone to the Mayo clinics in Rochester, Arizona and Florida with great success. It may not seem so, but you are lucky to have a diagnosis. It is so rare, people get shuffled around from doctor to doctor and have multiple ER visits before anyone figures out what is going on. There ARE things you can do, other than physical therapy...so please don't give up hope, learn as much as you can about the condition and treatment options, and keep looking until you get to the right medical center and doctors who can help you. Please let me know if I can give you any other information. Best wishes.

Jump to this post


Replies to "@Ims4ever I too have a paralyzed diaphragm. It is a rare condition which most primary care..."

My PCP, who just retired after 40 years in practice, stated she never heard of a sniff test when I asked about it 2 years ago.