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

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!

@giller198
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

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..!

@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/

Jennifer

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!

Welcome to Connect, @jgreg1954 I'm tagging @allisonsnow who also has experience with phrenic nerve issues, not from radiation but rather from a tumor.

JGreg, it must be scary to have your diaphragm paralyzed and decreasing lung capacity. Are there lung or breathing exercises that might help like those that people with lung conditions do?

I am going to ask my doctor to order the sniff test . Thank you for the suggestion .
I have a left elevated Diaphram
Trouble breathing
My left Diaphram moves to my back and I have to move it forward manually and “ pull it up “
I think I need surgery cause this is a nerve damage problem that has slowly progressed over two years s a result from a complication / injury in a surgery I had .

My Diaphram is not working on my left side . How do Doctor’s test the Phrenic nerve ?