No cause found for recurring right hemidiaphragm paralysis

Posted by Machak @machak, Fri, Jan 4 7:51am

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.

@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?

REPLY

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.

REPLY

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

REPLY
@merpreb

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

Jump to this post

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

REPLY

@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?

REPLY
@merpreb

@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?

Jump to this post

And yes, it is terrifying for me and my family…. it keeps getting worse each time it happens.

REPLY
@merpreb

@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?

Jump to this post

I believe this will be my fourth trip to Rochester.

REPLY

I bet it is @machak. Make sure your doctors know this.

REPLY

Will do, and thanks! I keep hoping I will run into someone with similar symptoms who can give me a lead to follow.

REPLY

I know.

REPLY
@machak

Will do, and thanks! I keep hoping I will run into someone with similar symptoms who can give me a lead to follow.

Jump to this post

@machak – I'd like to share a group that you might be interested in joining. https://connect.mayoclinic.org/discussion/phoenix-nerve-damage/
I think that you will enjoy meeting others who have similar problems. I'm going to pass your name to them to. Let me know how it goes!

REPLY

Just a brief update, I was diagnosed with "Shrinking lung syndrome" at my January Mayo visit….

REPLY

@machak I have never heard of shrinking lung syndrome. When I searched the term on the internet, I found several articles citing it as a rare complication of systemic lupus erythematosus (SLE). Do you have SLE?

REPLY
@merpreb

@machak – I'd like to share a group that you might be interested in joining. https://connect.mayoclinic.org/discussion/phoenix-nerve-damage/
I think that you will enjoy meeting others who have similar problems. I'm going to pass your name to them to. Let me know how it goes!

Jump to this post

Merry, may I correct you, It's called the phrenic nerve. Two of them, one for each diaphragm.

REPLY
@colleenyoung

@machak I have never heard of shrinking lung syndrome. When I searched the term on the internet, I found several articles citing it as a rare complication of systemic lupus erythematosus (SLE). Do you have SLE?

Jump to this post

Depending on which doc you talk to, yes, I fit the SLE category, though others say other autoimmune processes.

REPLY
Please login or register to post a reply.