Phrenic nerve on the right side was destroyed due to radiation for breast cancer. Diaphragm is now paralyzed & taking away lung capacity. Anyone else experience this?
Interested in more discussions like this? Go to the Lung Health Support Group.
@jeffreylwahl Thank you so much, Jeffrey! You may want to keep track of your symptoms in a journal and then you'll know how it changes as you work with your therapist and myofascial release. I think it will benefit you.
Please stay in touch and let me know how you're doing. If you wish, you may join the Myofascial Release Discussion here https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Jump to this post
I really appreciate the advice. I have my first appointment with my massage therapist next Thursday. I’ll start journaling as you suggested and am joining the group MR discussion group. Have a very blessed weekend😀
Thank you so much for the information. I believe I discovered some “ gold nuggets “ while reading and rereading your encouraging post. I’m going to contact my massage therapist today and make an appointment as she practices the type of massage therapy you described. I also have had a problem with holding my head up after an injury in October 2022, which actually could have been when the diaphragm was paralyzed but doubtful according to medical specialists. I cracked my T-12 disc when a ladder slipped out from under me and I landed flat on my back on a ceramic tile floor. They said it could take a year or more to heal but it still gives me problems. Exactly as you described, I’m bending my head forward, and my back gets very fatigued when for example, doing dishes or working in the kitchen looking down. I asked my MD if I needed to see a specialist and he basically said it’d be wasting my time. But you hit on several points that I have basically discovered myself and am searching for help. Thank you so much for sharing your wisdom..!
Hello, I saw your question about mobilizing the diaphragm and my physical therapist has done this with me and I breathe better after treatment. You might just have a physical problem with breathing since they ruled out a nerve problem. A lot of doctors are not aware of how fascia works since it hasn't been in the news until recently. I also swim which helps my lung function.
I've had some breathing problems with not using the lower portion of my left lung and for me it seems to be due to thoracic outlet syndrome which causes tightness through one side of my neck and chest to my hip which interferes with expanding my rib cage properly on that side and I have asthma, and that can make me breathe using neck muscles and the upper parts of my lungs. Sometimes ribs twist a bit because of the tightness. This problem causes phlegm to be hard to expel and that leads to one sided chest infections on the left side. I have a great physical therapist who is also expert level in myofascial release work trained in the John Barnes methods. My PT has manually released the tightness in my diaphragm to get it moving properly again. It's basically stretching the fascia similar to the way a Yoga stretch works. Having surgery creates scar tissue in the fascia, which creates tightness and adhesions. The lung tissue itself is nearly all fascial tissue and blood supply. If you haven't tried this type of therapy, it may be beneficial.
I had spine surgery at Mayo around the same time as your surgery, and the scar tissue increased the issues with thoracic outlet syndrome compressing nerves to my arms, and because I was in a neck brace for 4 months, I had to stop my physical therapy for awhile, but I have made progress again. TOS creates nerves trapped by the pressure of going through small spaces in-between the rib cage and collar bone and is made worse by poor posture like slouching with a forward head position. Forward posture also compresses the chest a bit. TOS causes tight muscles in the side of the neck, and because my spine surgery incision is very close to that area, it increased tightness which pulls everywhere.
I've worked with the MFR therapy for 4 years for TOS (which was interrupted by spine surgery) and it takes time to work through the layers of tight tissue. There are a lot of ways to self treat and I can feel the fascia pull from my neck down through my hips to my feet. It really is a network of webbing that interconnects everything in your body, and researchers now are starting to recognize it as another organ that they are calling the interstitium. The living fascia changes from a semi solid to a liquid state as it stretches and reforms itself. When you see the cob-web stuff when skinning a raw chicken, you're looking at fascia. The muscles are bound by the fascia that weaves through them which interconnects about everything in the body and tight fascia stops things from moving correctly and changes body alignment. I have not seen a physical therapist specializing in lung function. On days when my neck is tight and feel the pull of my surgery scar, I just stretch it out.
You can find information on MFR at https://myofascialrelease.com/. The website has a list of therapists, but you can also call Therapy on the Rocks (John Barnes practice) in Sedona, AZ and ask for names because not everyone pays to be listed on the website.
Here is some research about fascia https://myofascialrelease.com/downloads/articles/Structure_and_Distribution_interstitium_human_tissues.pdf
I was informed I had right paralyzed diaphragm at a post-op for quadruple by-pass surgery in April 2022. I just recently started looking at surgical options. I’m on a fb page for such and have read a lot of interesting stories of folks journeys into the seemingly little known area of paralyzed diaphragms. Many like myself, don’t know when or how for sure this happened. Just recently I had a cold and suffered SOB and it really motivated me to find some answers and start working with an amazing physical therapist. I can already feel the improvements in overall health, strength and can breathe somewhat better. I’m going through the process now of getting an appointment with a thoracic surgeon at Cleveland Clinic, since it’s the closest to me, there are other recommended surgeons I’ve read about that can repair/replace the nerve, by harvesting one from your leg I’m told. I’ve seen pictures and “ it ain’t pretty “. I hope this helps you or someone else in their plight. 3rd John vs2. Above all things, dear people, I wish that you would prosper, and be in health as your soul prospers. “ my paraphrase “
Pittsburgh has two large competing medical provider systems. Before I moved out here, I couldn't figure it out, so I bought a costly medicare supplement that would enable me to be treated by both. I started with one and have switched to the other. Both providers can access all my previous medical records, which sounds much better than what you are dealing with. I'm not that far from the Cleveland Clinic and could go there. I got spoiled by the approach Mayo takes having several specialists working together in teams for each patient. Anyway, I hope things go well with your appointment on the 4th, that your rheumatologist is correct in thinking your symptoms are being caused by inflammation, and that he/she can help you. Good luck!
Many thanks. I will keep you posted! I hope Your Thanksgiving is Mahvelous!!
Just to clarify, I don’t see my surgeon any longer. I moved about 45 minutes away, and with the advent of medical care being organized into “teams”, he was on one team and the preponderance of physicians in my new location is on another team. They can’t refer to each other and they can’t or don’t refer to hospitals and other diagnostics centers that aren’t affiliated with their team.
I’m certain it makes all in the team more profitable. In my opinion it doesn’t necessarily benefit the patient, although I realize a case could be made that it does. Going to a cohesive multi-discipline care center like Mayo is a Gold standard. But I’m not a fan of how that has been emulated in community medicine.
Well no one Commented about elevation on the radiologist report for the chest CT.
The x-ray technician would have commented on it, so that's a piece of the puzzle. When I lived in southern MN, I was really fortunate to get all my medical care at Mayo Clinic. I'm in PA now but read through my records from 25 years ago on the Mayo Clinic portal. All of the x-ray reports indicated a raised left diaphragm...which is how I know I've had this for a long time. I asked my wonderful Mayo PCP why no one had followed up on this, and she said they didn't if a patient wasn't experiencing symptoms. There is another wonderful discussion thread on Mayo Connect I used to follow on Mysterious Shortness of Breath if you're looking for other thoughts. I would bet, however, you are absolutely right thinking this has something to do with your cancer surgery. I'm not surprised your cancer surgeon doesn't want you to pursue the precise cause and absolves him/herself of any responsibility. In my opinion, you really need to know what is causing your current symptoms and what you can do about that, rather than focus on the specific triggering event. That was about as clear as mud, sorry. My paralyzed diaphragm could have been caused by a motorcycle accident, falling down a flight of stairs, flipping over 3 times in a light pickup, malaria, rabies treatment, several operations, numerous vaccinations for working and traveling in East and West Africa, various viruses, etc. It doesn't really matter to me what caused it. It is what it is, I've ruled out surgery at my advanced age, I'm coping pretty well, and I'm concerned about dealing with the symptoms as they arise. I hope that makes sense. Anyway, if you think your diaphragm is damaged and causing your problems, you can find out one way or the other by having the SNIFF test and have a neurologist test your phrenic nerve. If your diaphragm isn't the problem, you'll have to keep looking. I don't know what a rheumatologist does but will look it up. I have a pulmonologist, cardiologist, gastroenterologist and wonderful PCP on my medical team....along with a Traditional Chinese Medicine healer who does acupuncture and chiropractor, who does not use manual manipulations. I'm pretty happy with them but do miss the Mayo Clinic!
PS Wow -- what a rheumatologist does is pretty cool. I've gotten really interested in inflammation, particularly inflammation resulting from leaky gut, being the cause of most chronic diseases. A few people in my facebook group attribute their paralyzed diaphragm to Parsonage Turner Syndrome. I think PTS may have something to do with the body attacking itself and the resulting inflammation irritates the phrenic nerve, which in turn weakens and/or paralyzes the diaphragm. I haven't really paid much attention to it; but what is interesting is that in at least 3 instances where PTS was the culprit the phrenic nerves healed themselves over time and the diaphragms started working again.
I'm so glad to find this post. I tried to find out what your symptoms are and couldn't find anything. I'm 77 and not very swift on the computer, sigh, It is confusing. My Pulmonary Function Tests indicate my lungs are working with normal parameters, yet my SNIFF test proved I have a left paralyzed diaphragm. I later found out from consulting the foremost authority in the country on diaphragm issues -- Dr. Mark Ginsburg at the Diaphragm Center at Columbia Medical Center in New York -- that my left lung isn't working at all. Thus, my heroic right lung learned over the years to compensate for my nonfunctioning left lung. There are several tests a neurologist can do to see what's going on with your phrenic nerve, including a nerve conduction test (EMG I think it us), MRI, etc. Does your chest x-ray show you have an elevated left or right diaphragm? If you think your diaphragm is paralyzed, please get a SNIFF test done to rule that in or out. Just knowing one way or the other will help you figure out next steps. I had it done in the radiology department of a large hospital. You've really been through a lot! Please let me know if you have any other questions! Happy Thanksgiving early!
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In