United Brachial Plexus Network, Inc.

Hi Jill my daughter is 1 and besides bpi has had congestion and wheezing in her lungs bilaterally. It has been a bad cold and flu season for us and I assumed she was just going to develop asthma and we would deal with that. I know about the phrenic nerve damage and has had 2 x-rays that show no indication of a hemidiaphragm and had no breathing problems at birth. It did show a little air trapping. It sounds like we are going to be put thru a battery of tests starting with cystic fibrosis and bronchoscopy etc. They are looking at causes other than asthma as she is not responding well to the 3 meds she is on now. Just wondering if anyone has a child who has phrenic nerve damage that didn't show up in an x-ray or wasn't evident at delivery? The doctor who I do like alot said it is obvious on x-ray. Just asking before we put her thru the ringer. Doesn't hurt to ask. Please keep Jill in your prayers.

It will show up on the x-ray if the diaphragm is not working at all. It did show up for my daughter but it took a month after injury. The best test is a floroscopy which will watch the movement of the diaphragm as the child breathes. I would ask for that test first. It is painless and doesn't take long we always get the results while I am stading there watching it because the radiologist has to perform the test not the tech. The asthma medicine does not help my child either because she does not have asthma, her right lung just does not work at all. When she was younger she stayed sick but she is now 12 and besides her yearly pneumonia she is fairly healthy. Best of luck.

I am 38 and had my phrenic nerve severed 7 months ago. My doctor made a "slip" while removing my pacemaker leadwires. He cut my superior vena cava and phrenic nerve. I am oxygen now, have had pluerisy, paracarditis, and fluid in my lungs. I am on medication now. I need to do something.
I am curious to see if anyone else has looked into a nerve graft or other procedures for repair?

We just did an UTS, which can show the diaphragm moving. I asked about the floroscopy after reading this post. The radiology doc said it uses large amounts of radiation, so best not done if possible. Who knows?... Just sharing our experience.

Chelle911

My daughter's phrenic nerve was cut during a surgery as well. They did try to use an intercostal nerve (basically a rib nerve) to fix it but it had been to long. She has had three plications of the diaphragm prior to that where they basically try to down the diaphragm but all have failed they diaphragm has just atrophied to much.

My daughter has had several floroscopy, they do cover up all the female organs with the lead apron. I have not heard of the UTS but if it will give them an accurate diagnosis then I am sure its fine. Did they tell you the results yet?