Bilateral phrenic neuropathy

[prairiegirl5]

Hi guys,

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!

 

[lgelb]

I don't think you're going to find anyone here who has had the operation, Prairiegirl, because it isn't applicable in ALS. It appears possibly a good fit for you. This is an overview that discusses the results and indications, so it might help you. As with any surgery, you should consult with someone who has done a significant number with good results, who may not be in your back yard. All the best.

 

[affected]

I agree that we probably can't help, but Laurie has given a great link for you. No surgery is at all beneficial in ALS.

Probably this thread should be moved to the off topic area as it's not a general discussion about ALS.

You never know if someone may have something to add though because they have had a friend or relative in your position.

 

[Atsugi]

Priariegirl. I hope that you can find a website that can help you.

I wholeheartedly agree with Laurie that, as serious as it is, this topic isn't applicable in ALS and I also agree with iIllie that this thread should be moved to the off topic area.

The kindness and knowledge of our members are nearly boundless. But I worry that if we offer any advice to non-ALS people, an inch will become a mile pretty quickly, materially detracting from our ability to support people who are dealing with ALS.