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

Thank you Colleen.

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

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, 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.

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 @ejrdevries, sounds like you've had a lot going on health wise. May I ask what type of cancer you had? Is COPD a relatively new diagnosis for you?

I had endometrial cancer Stage 3c2 and grade 3 tumor in 2007. i had surgery, chemotherapy, radiation, brachytherapy, and more chemotherapy. As a result the cancer was stopped in its tracks, but I have peripheral neuropathy in my legs and feet as a result of the high does chemo. I have used a walker ever since then. The COPD was diagnosed in 2014. I had already been using a CPAP since 2002.

Thank you for the extra background. Your experience with endometrial cancer would be most welcome in the Gynecologic Cancer group here: https://connect.mayoclinic.org/group/gynecologic-cancer/

And you may wish to join this discussion specifically:
- Need hope: Neuropathy from chemo https://connect.mayoclinic.org/discussion/needshope/

I have been dealing with right hemidiaphragm paresis since about 2000. Happy to give any pointers I can, though mine is caused by An autoimmune condition attacking my nerves. The biggest difference is mine comes and goes as the nerve gets damaged and repairs itself during flares and calm times in the disease. For me it last from days to months, but so far has always come back eventually.

Just found this group while googling phrenic nerve damage and trying not to spiral mentally from all this.
My left unilateral phrenic nerve paresis was discovered in October 2021, months after a left bicep tendon repair. I knew something was off, but chalked it up to getting older and being out of shape after the surgery and recovery time.
My first big house fire after going back to work showed me something more was going on.
Since this is an on the job injury it falls under Workman’s Comp, but I was just told yesterday that there was nothing more they could do because no one in my area wants to take a work comp case. I haven’t seen ANYONE yet, just two rounds of physical therapy. I haven’t even been officially diagnosed yet.
My bicep repair surgery was April of 2021 and I have been on “light duty” since October when the first xray caught the elevated diaphragm with Atelectasis on left lung base.
I assume I will eventually be retired from firefighting from this, but not having seen anyone at all is infuriating.