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

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.

Hi @sumimasn, welcome Connect.
I did a quick search for surgeons in Toronto and found this 2009 paper by 2 doctors at Toronto General Hospital, UHN
Acquired Paralysis of the Diaphragm https://www.thoracic.theclinics.com/article/S1547-4127(09)00070-X/abstract

TGH might be a good place to start. How did your diaphragm become paralyzed?

Hi there, does anyone know of a surgeon who can repair in the Toronto area? I was diagnosed with a paralyzed diaphragm and Im desperate to aggressively have it repaired if possible Thanks so much and best to each of you who have the same problem as me.

Greetings, I am new to this group. I survived a ruptured appendix for three days and then pneumonia and sepsis in October 2014. January 2015, I was still lacking energy and no longer able to go up a set of stairs w/o having to stop. Long story short, 48% lung function. I live at a high elevation. Went on vacation at the shore. Within days, the head aches lessened, my energy level improved, nose bleeds stopped and the fog lifted. I am now determined to relocate to sea level. I am also going to look into Dr. Kauffman. Those familiar with his work, ANY idea what he charges? I know all surgeries are different, but a ballpark...... Thanks for reading. Looking forward to learning and meeting others with phrenic nerve damage.