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

I have right phrenic nerve damage from radiation to abdomen and chemotherapy. I have known this for 7 years. I have used a BiPap since that diagnosis but find that over time my activity level has dropped due to shortness of breath. I was on Metoprolol XL for a long time but had to be taken off of it when I began using inhalers for asthma/COPD. I keep an oximeter at hand to monitor my oxygen levels. It is discouraging to be so limited, but still life is good.

Hi, I am newly diagnosed. Is there a handout for the program on the paced breathing? I ordered a couple of Dr. Sood books but they won't be here until later in the week.

Dear NJH, between breathing problems, frozen diaphrams and Covid 19 its been a really difficult couple of years for a lot of people.,,you and I included. I recogniize all your issues but don't recognize the term Atelectasis. I was on oxygen for about a year (24 hours a day). I have an appt. in August to see where I stand with my lungs. I exercise A LOT and, like you, use Ventolin on a regular basis, seem to have a little asthma and COPD that compound the breathing problems. Sleep with a fan a night. Now, I have a lot of nerve problems. When my diaphram stopped working on my left side after biopsies and lobe removal surgery, the Pulmonary said that this is usually the affect of a nicked phrenic nerve. This type of damage usually resolves itself, if it is going to, within a year. It didn't but l I feel better these day (a lot better and I hope you do too) I am trying to resolve the nerve issues or at least get a solid diagnosis. Every doctor I have seen for the nerves want to blame it on a different type of nueropathy, I am a T2 diabetic but the nerve problems, the supposed Raynaud's, and carpal tunnel have all been blamed on that but it all started with the surgery. Keep your chin up. Covid-19 taught our doctors a lot of new stuff about our lungs.

Hi @pc2018
I have not had radiation but I have a Paralyzed Right Diaprahm most likely caused by Cervical Spine Surgery (Anterior Discectomy). I was diagnosed when I had a followup Chest X-Ray following Pneumonia, where they saw something wrong. I then had a CT Scan of my chest which led me being sent to a Pulmonologist. He ordered a Sniff Test which provided a diagnosis. I haven’t had any treatments for it, but I do have Atelectasis at the bottom of my right lung, and I get winded easily. I sleep with the head of my bed elevated, because when laying flat abdominal organs move up and make breathing more difficult. My Pulmonologist said I have some restriction in my right Lung. I also have Mild Persistent Asthma so use Ventolin and Pulmicort Inhalers which help keep my lungs open.

NJH

Thank you Colleen.

@userunknown Do you think that physical therapy may help? There are physical therapists who specialize in breathing issues. I haven't had your experience, but my breathing has been physically affected by issues because of thoracic outlet syndrome causing muscle tightness through my chest so it doesn't expand properly on one side, and having asthma and allergies doesn't help. My PT has done some muscle releases and also diaphragm releases that helps my chest move better with breathing. This may be something to ask your doctor if you could benefit from something like that or if it would be risky because of the cancer. Have you been seen by a pulmonologist? They may be able to render an opinion as to why the diaphragm is in a stuck position and if inserting a breathing tube could possibly damage the phrenic nerve. I imagine that might be a hard question to answer. I certainly understand that you are in a difficult position and hope you can find some answers.

@windwalker My hands and forearms still get blotchy and if my symptoms get kicked up because of overuse of muscles, my hands can still get a bit cold, but they don't turn as blue any more. Right now they have a mottled appearance on my palms, and yesterday in physical therapy, I was doing exercises to strengthen muscles around my shoulder blades and I ache a bit today. In TOS, the front of the chest is too tight, so you try to loosen the front, and strengthen the muscles in back in the shoulders to hold the shoulder where it belongs instead of it going too far forward. My suggestion would be to look into physical therapy with Myofascial release with a therapist who is familiar with TOS. Thoracic outlet syndrome (TOS) is entrapment of the nerves and vessels where they pass through some small spaces in between the collar bone and rib cage. There are similar types of issues that can happen in the pelvis because of alignment. MFR can loosen things and get it back into better alignment. Our habits of computer and screen time and the posture that goes with it is a contributing factor to a problem like this. Here is the discussion on MFR with lots of information. That would be conservative and it might help. MFR helps a lot of things and gets the body moving again as it should. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@jenniferhunter My daughter's hands and feet turn blue/purple along with big red splotches all over her body. We were told it was Raynaud's Syndrome. Now, I wonder if it isn't something more.

@userunknown I've read about Dr. Kaufman and the website says he is the only one in the country doing that surgery for a graft of the phrenic nerve.. I know it's not convenient, but you have to consider how much your life could change with the right doctor. I also live in IL and tried to get several surgeons to help me for a spine problem and none would. I was refused 5 times before I came to Mayo which was a 5 hour drive for me, but it was worth it. You definitely need another opinion to determine if your phrenic nerve was damaged because you will not get that from your current doctor. I had a similar situation once when I had carpal tunnel surgery that didn't fix the issues because they missed that I had thoracic outlet syndrome and the surgeon wanted nothing to do with me. He wouldn't even sign for physical therapy and claimed he wouldn't be able to judge if it would help or not. As far as he was concerned, his job was done, and he didn't want a poor outcome. One of the symptoms of TOS is impaired circulation that makes hands turn blue and cold which is what I was telling the doctor was happening. He took my pulse, said it was fine and accused me of malingering in his notes. I had to get another opinion from a doctor who was familiar with TOS and I did get a diagnosis and help. Carpal tunnel and TOS have overlapping symptoms.

The specialist I saw was t able to determine for certain, but believes it was from a prior motorcycle crash. I’ve had many crashes over years as I used to race and I never had my breathing tested. I tried to contact the doc who diagnosed me and he hasn’t got back to me for months and I just feel I want to move forward aggressively to see if I’m a candidate for the procedure. I’m a bit overweight and have been working hard in a running program, but I have to walk run because my breathing just won’t allow me to run. I used to run long distances when I was younger and I’m registered for some races and the rest of me physically would allow me to improve greatly if I could breath normally. Thanks for your help.