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Posts (9)

Sun, Jan 6 6:13pm · Phrenic Nerve Injury - David's Story

Yes, @kellyle is correct. Ask his doctor to order a "Diaphragm Flouroscopy. I think that test would give you some answers. Good luck!

Feb 19, 2018 · Phrenic Nerve Injury - David's Story

Hi! Thank you for the suggestion of the fluoroscopy! I didn’t think if that. What type of doctor would I see to ask for this type of test? I only felt it was still possibly the Phrenic Nerve because I doubted the EMG result. The doctors have been so perplexed by my symptoms that they either dismiss me or think I’m nuts :(. I have had a complete PFT test with the pulmonary specialist and passed that.

Feb 18, 2018 · Phrenic Nerve Injury - David's Story

Hi! I have NOT gotten a diagnosis yet, and the symptoms I am having are becoming more significant. I am very frustrated. I have seen 19 specialists to include ENTs, Pulmonary, Ortho, Neurologist and Neurosurgeon, Homeopathic and alternative medicine, Fascia specialists, etc. I am starting to think maybe my issue is spine related. It seems everytime I lift my arms up over my head, bend over, or lift something in front of me, I get that squeezing feeling that starts in my gut and feels like my airway is being cut off, and I end up getting short of breath. If I talk, I have a very hoarse voice — and my voice goes back to normal when I stand straight with my arms at my side… I know… sounds very strange, but it is real! Even though Johns Hopkins Neurology said that they didn't see anything with my phrenic nerve or diaphragm, I am going to get a second opinion.

Oct 2, 2017 · Phrenic Nerve Injury - David's Story

Hi Shellie, I had a sniff test when they did an EMG test at Hopkins to see about my diaphragm. They said “there was nothing that jumped out at them.” UGH… My symptoms have progressed… now when I lay down, if my husband puts his hand on my back, or any pressure on my side or chest, I get that constricting feeling like my airway is being cut off… but it starts from my gut if that makes sense…. ugh. I am about to go to investigate a trip to Mayo Clinic! What is Parsonage Turner syndrome? How are you doing now? What are your symptoms? Mimi

Dec 13, 2016 · Phrenic Nerve Injury - David's Story

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!

Dec 12, 2016 · Phrenic Nerve Injury - David's Story

I think an EMG shows damage.. it is where they have this needle (tiny) inserted by the nerve, and it shows on a screen. I am sure that some of the other people who have previously responded would have more info than I do….

Dec 12, 2016 · Phrenic Nerve Injury - David's Story

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?

Oct 7, 2016 · Phrenic Nerve Injury - David's Story

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