Hi there, thanks for responding! I am sorry it took a while to get back to you. I have had MRI with and without contrast of the brain, of the c spine, of the neck, face, orbits. I have had two pulmonary function tests, a lot of blood work, carotid testing, vascular, every cardiac test you can think of, Chest CT, Arteriogram of the c spine, and I just had an EMG with a nerve conduction study where they put needles in my right bicep, left deltoid, right groin, diaphragm, left forehead. I have had digestive symptoms, yes, but they are relieved by an enzyme supplement. I don’t have stomach pain… no belching. I haven’t had a sleep study. My issue is getting worse… just carrying stuff to the car, walking up stairs, doing laundry, I feel like my airway is compromised and something is pushing back on my chest, and i start having difficulty breathing… but I lose my voice. Today during physical therapy (for my knee) — because I get very weak, and have decreased sensation on my left side — left face, all the way down my leg. (yet another lovely symptom.) today, I was laying on my back doing a core-building exercise and had shortness of breath trying to strengthen my core… ugh.
I don’t know if it is my phrenic nerve… they said my diaphragm looked ok. So frustrating!
Mimi
My husband recently had ablation surgery that went terribly wrong (the surgeon punctured heart wall & he almost died). A couple of weeks later, with recovering very far away, they determined the phrenic nerve has been frozen & the diaphragm paralyzed. Luckily, if there is any luck in this, the pulmonary specialist took a picture of the diaphragm just before the surgery and just after – there it is in pictures, even I could see it clearly. It does show, if the diaphragm is affected, it will show.
I had the ‘sniff’ test during the series of tests at Johns Hopkins. They did blood work that came back ok, and they even tested me for a genetic disorder called Pompe Disease. Thankfully, that was negative, but still no answers. I don’t know what to do… Something is pressing on something major because if I bend down, and try to pick something up, or do something, I get short of breath. This is frustrating at best. I was told by one specialist that I had an enlarged lymph node on the right side of my throat…this lymph node was noted by my primary care doctor two years ago. Why hasn’t anyone done anything about this lymph node!!?? If you all were in my shoes, what would you do next… go back to the ENT?
The symptoms you are describing sounds like mine. I now have restrictions on what I can do. Bending over cuts my breathing off. Just getting in the bed at night I have to start gasping for air until I get my oxygen level back up. I’m sure it’s Phrenic nerve damage from what I’ve been told and read up on. My right diaphragm is paralyzed according to the Lung doctor.
Hmm, go to a Neurology specialist. I went to one at Hopkins, and that is when they did the EMG with the needle to check my phrenic nerve. They told me that my diaphragm looked ‘ok.’ My next step.. probably going to an ENT in New York to see if I have some sort of paralysis somewhere else or if something is pressing on a nerve when I move certain ways. So complicated!!! Keep us up to date on your health!
@mclweaver
Hi, I am new here! I happened to come across this article on the internet after my frustration level reached a point where I thought “There has to be SOMEONE out there with my symptoms. There has to be an answer.” I have seen 15+ specialists, including Johns Hopkins and University of Maryland. I believe that I have the same symptoms as David Powell.
I become very short of breath, followed by dizziness (from not being able to breathe) if I walk up the stairs, walk on an incline, bend over, reach up above my head, squat down…. I believe that an incident in 2012 where a 260 lb motor bike fell on top of me, after I fell 3 ft backward off a truck onto my back, may have caused injury to now cause these symptoms (which have been getting worse since 2013.)
I have an upcoming appointment with yet another specialist… a neurosurgeon. What can I do to help him understand that I would like to be tested for phrenic nerve injury? Thank you for any help or suggestions!