No cause found for recurring right hemidiaphragm paralysis

Posted by Machak @machak, Jan 4, 2019

Has anyone out there experienced paralysis of the hemidiaphragm that comes and goes? I've been experiencing this for years with no diagnosis, but the symptoms are getting worse as time goes by. When it becomes paralyzed my lung capacity drops by about a third, breathing becomes labored, and oxygen saturation drops (making my heart race to try to compensate). I've gone all over the country looking for answers, but no one has been able to explain it or suggest how to treat these episodes (much less prevent them). The diaphragm stays paralyzed for a while then starts working again. The longest it has stayed paralyzed was about 6 months, but most often it is a couple of weeks. It then starts up again, but eventually starts getting weaker and stops moving again several times a year. it severely impacts cognitive ability memory formation when the O2 starts dropping, which has made continuing in my job impossible.

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Merry, Alumni Mentor | @merpreb | Jan 4, 2019

@machak - Hello and welcome. This must be very scary for you. As you know the hemidiaphragm is only half of the diaphragm. How do you know that you have this if it hasn't been diagnosed? What do you do when this happens?

Machak | @machak | Jan 4, 2019

Sorry, I should have been more clear.... The paralysis has been diagnosed by repeated "sniff test" fluoroscopy (showing paradoxical motion when paralyzed and then reverting back to normal motion when it recovers) , while elevation of the diaphragm shows up on x-ray. What hasn't been found is a cause for why this happens or why it recovers. I'm traveling back to Mayo for another round of review next week. When it happens, I rest and keep an eye on it to make sure I deal quickly with any infection that starts up from the areas of the lung that stop opening. I try breathing exercises as well as Spiriva to try to keep everything open as much as possible. They've tried steroids with minimal success, but eventually it starts working again.

Merry, Alumni Mentor | @merpreb | Jan 4, 2019

@machak - Ah Ha! Let me know what they say. By the way, that's a great place to go! 🙂

Machak | @machak | Jan 4, 2019

In reply to @merpreb "@machak - Ah Ha! Let me know what they say. By the way, that's a great..." + (show)

Yes, this will be my fourth visit.... I'm still hopeful. Any tips?

Merry, Alumni Mentor | @merpreb | Jan 4, 2019

@machak - Make a list for the reasons that you are returning and bring it with you. Do you think that they an perform any surgery for you that would correct it?