Bilateral phrenic neuropathy
 

I do not have ALS but I thought maybe someone here would have some insight to help me out. I was "diagnosed" 12 years ago with with bronchiectasis and interstitial lung disease. That was the initial diagnosis, then it was changed to simply restricted lung disease. They didn't know what to call it and told me I was an enigma to them because I wasn't getting worse.

Finally, the doctors looked at my diaphragm and after an EMG study diagnosed me with bilateral phrenic neuropathy. My phrenic nerves showed no response at all so my diaphragm is completely paralyzed. The doctors are telling me that diaphragm plication is an option and the surgeon says he thinks it might really help me. Is there someone here that has had this operation and can tell me if this is a good choice for me? My FVC is only 32% of predicted probably because my diaphragm is paralyzed on both sides.

Thanks!

Hello prairigirl5,

I just wanted to send you a "Welcome" to the NeuroTalk Support Groups.

I'm very sorry you are dealing with these problems and possible surgery.

I used the
Forum Search Feature to see if there were any older posts containing the term - phrenic plication - and some came up in the

Thoracic Outlet Syndrome Forum
Even though you don't have that condition, some of the posts may be helpful, I'm not sure.

Here is just one example with highlighted words from my search
posts - Phrenic nerve irritation

Welcome to NeuroTalk
 

Hi prairigirl5,

Welcome to NeuroTalk! :D

I am sorry you have cause to be here; yet, I am glad you are reaching out and asking questions.

I am sorry there has been confusion about your breathing issue(s).
Seems like quite a jump from bronchiecstasis and interstitial lung disease to a paralyzed diaphragm. Any chance all three conditions have been present at one time or another?

I think you are doing yourself a major favor by researching your option(s).

I wish I had more helpful information t the moment.

Please make yourself at home here on any of the forums. :)

Hope to see you around NeuroTalk!

Warmly,
DejaVu