Paralyzed Diaphragm

Posted by giller198 @giller198, Jul 3, 2018

My name is John and I was diagnosed this past January with a paralyzed right diaphragm. Phrenic nerve damage has been ruled out because of the amount of time between my heart valve surgery and when this started. I still cannot figure how this happened, I have a couple of ideas but nothing conclusive. I have seen two pulmonary doctors and both say there is a surgical procedure that can be done but no guarantee that it will work. I would like to know if anyone out there has been diagnosed with a paralyzed diaphragm and if they had it fixed.

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janja1949 | @janja1949 | Feb 27 8:32am

Mayo has a team that treats diaphragm disorders. I am going to look into that. Both of my diaphragms are affected. I had an atrial ablation. I have a pacemaker.
I’m basically in good health but my quality of life is affected.

marinovey | @marinovey | Feb 28 9:03am

In reply to @colleenyoung "Welcome, @marinovey. It sounds like you're adapting well. May I ask what led to the right..." + (show)

I had an overactive thyroid due to a nodule no cancer. I was on medication but Endocrinologist suggested the surgery so not to be on meds so long . After surgery I was slightly under active so now on low dose Synthroid!

billcolo | @billcolo | Mar 16 7:58am

Does anyone suspect a connection between paralyzed diaphragm and COVID or the COVID vaccine? I am pro-vaccine, but the timing of my PD onset, three years ago is suspicious.
When I got a booster vaccine about a year ago, she asked, as a standard question, whether I had any problems with my diaphragm. I said, yes, I have PD. She said, well it’s probably OK and gave me the shot. I am functioning well with my PD, except I can’t swim anymore— it used to be a big part of my life. Thanks

studnicka50 | @studnicka50 | Mar 16 5:10pm

In reply to @giller198 "My biggest challenge would be able to swim like I use to. I'm a member of..." + (show)

I have been struggling with the same issue with swimming .. Last summer in the beginning I would not make it far with out stopping for air …but continued on and it got better . This year is even more challenging and my Diaphram on the left is not functioning correctly . Does your rib cage stand up straight when you lay down ? I have a referral to a Thorasic Surgeon . I don’t know what I am doing as far as a plan .

nla4625 | @nla4625 | Mar 18 7:42am

In reply to @rtmjohnson1 "I have the same condition. I have diaphragm paralysis on my right lung confirmed by a..." + (show)

A paralyzed diaphragm is a pretty rare disorder that most doctors, including pulmonologists, don't know much about. It's probably a better option to have a consult with a thoracic surgeon, since they do plication surgery, which might be your only treatment option. I'm 77 and extremely lucky because my symptoms being caused by my left paralyzed diaphragm are mild and manageable. Thus, I've decided not to have surgery, even though two thoracic surgeons recommended it. I hope you can find a thoracic surgeon who has had experience with doing them. Best wishes!

nla4625 | @nla4625 | Mar 18 7:54am

In reply to @billcolo "Does anyone suspect a connection between paralyzed diaphragm and COVID or the COVID vaccine? I am..." + (show)

I'm not an anti vaccination activist OR a conspiracy theorist, but I think both COVID and the COVID vaccination have caused diaphragm paralysis in some people. Several of the 1,400 members on the facebook page for people with paralyzed diaphragms think this is what caused their paralyzed diaphragms. In addition the most prominent doctor in the world dealing with paralyzed diaphragms posted that he has treated a handful of patients where both sides of their diaphragms had become paralyzed due to COVID and/or the vaccine. Fortunately, all of them recovered over time.

billcolo | @billcolo | Mar 19 5:36am

In reply to @nla4625 "I'm not an anti vaccination activist OR a conspiracy theorist, but I think both COVID and..." + (show)

Thanks for this. Nice to hear that people are recovering.

nla4625 | @nla4625 | Mar 19 9:03am

In reply to @billcolo "Thanks for this. Nice to hear that people are recovering." + (show)

The phrenic nerve can heal itself slowly, which is why most doctors recommend waiting a year or two after the onset of a paralyzed hemidiaphragm before having plication surgery to give it time and see if it will. Other vaccinations and diseases like Parsonage Turner Syndrome also cause paralyzed diaphragms, so COVID and the COVID vaccine aren't the only culprits.

rtmjohnson1 | @rtmjohnson1 | Mar 20 11:05am

Has anyone seen successful results from plication surgery to treat paralyzed or partial paralyzed diaphragm? My Doctor says he’s never seen a successful case and won’t recommend it.

nla4625 | @nla4625 | Mar 21 6:05am

In reply to @rtmjohnson1 "Has anyone seen successful results from plication surgery to treat paralyzed or partial paralyzed diaphragm? My..." + (show)

If your doctor's blanket statement is that plication surgeries don't work and improve people's lives, he or she is sadly mistaken. Shortly after mine was diagnosed, I joined a facebook page for people with paralyzed diaphragms; and many of them have had successful plication surgeries that restored their lives. If you are interested in pursuing having it done, I would encourage you to find a thoracic surgeon who has done a lot of them to evaluate your particular situation. Good luck!