Phrenic Nerve damage and paralyzed diaphragm: Anyone else have this?

I didn't realize UCLA has a center for phrenic nerve repair and a surgeon there who collaborates with Dr. Kaufman. Thank you for this valuable information. It will be interesting to see if you are accepted as a patient there, since you are over the age limit for Dr. Kaufman to do this surgery. Please keep us posted -- best wishes! https://www.uclahealth.org/medical-services/surgery/plastic-surgery/reconstructive-services/phrenic-nerve-repair

UPDATE -- there are evidently two facebook groups now supporting people with paralyzed diaphragms. I belong to the one with over 1600 members and don't know anything about the second group. I think it changed its name from something to do with the phrenic nerve damage to a wider topic of paralyzed diaphragm.

I had discs removed from my C-Spine and my neck fused. 1 1/2 years later I started having trouble breathing. After multiple tests and various doctor’s visits it was determined that the Phrenic nerve originates in the discs that were removed. My nerves are dead at the bottom of my right lung and the right side of my diaphragm is elevated and has paralysis. There is less than 10% of the nerves regenerating. I’m on 2 liters of oxygen at night along with a portable machine when walking or physical activity. When sitting my percentage of oxygen saturation is usually 90%-94% and I don’t need oxygen. However doing all the tests for the Pulmonologist my oxygen level dropped to dangerously low levels (72%-87%) for every test.

Yes, I have had it for years. Went to Mayo initially and they confirmed it. What I do has worked for me. I used a full face mask CPAP every night. Wake up refreshed in the am. I also work on breathing exercises. I am no doctor, but I do know there are muscles that can be strengthened to help move the diaphragm. Talk to your physical therapist about it. It also works for me. Also, realize that it is possible to create what i call back pressure by doing the breathing exercises for COPD. No need to understand the physics of air flow and pressure. Just know that working on breathing exercises does help. It is work, but work does yield increased lung capacity. I have chosen not to use supplemental O2 and I force myself to use all the muscles possible to move my diaphragm. Think positive and know that your body is way more amazing than you think. But as always discuss with your doc before doing anything new. Cheers!

My right diaphragm has been paralyzed now for 6 years with no known cause. Doctors assume that it is related to my Thoracic Outlet Syndrome, but I have been handling that for 35 years, and the diaphragm started 6 years ago. I have been assuming phrenic nerve damage, but after reading these posts, and seeing it can be caused by other things has me wondering. I will look into the FB page, and getting an EMG, if that is possible.

My main question is this...does anyone have any severe pain associated with their paralyzed diaphragm and/or phrenic nerve damage? I have a pain that started at the exact same time that I started having the symptoms of difficulty breathing. The pain is on the back of my shoulder, but more between the base of my neck and my shoulder. I have been cleared by an Ortho, so I know it is not that. It hurts all the time, and is worse when I breath deeply, or have to hold my breath. I can deal with the diaphragm and breathing issues itself, but this pain is terrible, and no doctors I have met with seem to care about it because they are distracted by the diaphragm or my TOS.

Any help is greatly appreciated.