Phrenic Nerve Injury – David’s Story
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Help for rare, frustrating breathing condition
Rare condition prevents diaphragm from getting the message to breathe
David Powell could not catch his breath. The 35-year-old from San Diego got winded walking up the stairs, exercising or even just bending over to tie his shoes. His favorite pastime, hiking, became impossible. But doctors, unable to diagnose his condition, told Powell that he would just have to live with it.
Frustrated, he turned to the Internet and discovered that his symptoms could be the result of phrenic nerve damage. The phrenic nerves — there is one on each side of the body — send messages from the brain to the diaphragm telling the body to breathe. Powell also learned that the damage could possibly be repaired through surgery.
Injuries to the phrenic nerve can occur in a variety of ways, including injections of medicine in the neck prior to shoulder surgery or to treat pain, chiropractic adjustments of the neck, or neck, chest or vascular surgery. In addition, scar tissue can form in the neck and compress the nerve. Patients are often misdiagnosed because the symptoms are similar to those of pneumonia or asthma. Doctors typically diagnose phrenic nerve injury by conducting a physical exam, asking the patient about previous medical treatments that may have affected the neck or chest, and considering whether the patient has severe shortness of breath and is unable to perform simple day-to-day activities.
“If we suspect that it is a phrenic nerve injury, there are a couple of tests that can help us make a definitive diagnosis,” said Dr. Reza Jarrahy, an associate clinical professor of plastic and reconstructive surgery at UCLA.
Jarrahy said surgery for the disorder aims to identify the exact location of the injury and then repair it by removing the scar tissue and freeing up the nerve. In some cases, surgeons take a small piece of nerve from the person’s leg and use it as a bypass around the injured nerve, creating a clean route for the nerve signal from the brain to the diaphragm.
Although many people notice an improvement immediately following surgery, it may take a year or more for the new nerve to regrow and form new connections in the body. Also, the diaphragm muscle must be retrained and strengthened again.
“Even though diaphragm paralysis impacts the respiratory system, the underlying pathology is focused on nerves and muscles,” said Dr. Matthew Kaufman, a voluntary assistant clinical professor at the David Geffen School of Medicine at UCLA. “As a result, many medical professionals are unaware of phrenic nerve surgery.”
In 2007, Kaufman began specializing in the procedure at his plastic and reconstructive surgery practice in Shrewsbury, New Jersey. In 2013, he teamed up with Jarrahy to offer the surgery at UCLA. Together, the two centers have treated more than 100 patients, up to 80 percent of whom have made a partial or complete recovery.
“These patients suffer tremendously and yet have very few options,” Jarrahy said. “This surgery offers hope to patients who previously had none and were resigned to dealing with this debilitating condition for life.”
Powell underwent the procedure in August 2013, and is no longer sidelined by his condition. He can once again enjoy all of his favorite activities.
“It’s so much better,” he said. “Before, I pretty much couldn’t do anything, but now I can do exercise—hike, ride my bike and swim.”
I have the same symptoms. What diagnostic studies did you have? Were you ever told that you may have a post viral infection? Did you have any stomach pain? Excessive belching?Have you had a sleep study?
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
I have the same symptoms. What diagnostic studies did you have? Were you ever told that you may have a post viral infection? Did you have any stomach pain? Excessive belching?Have you had a sleep study?
My lung doctor sent me for what is called a sniff test. While you stiff during an xray you can see on a screen if the lung is inhaling or exhaling. Mind on the right side was not and was paralyzed. It was damaged during my Appendix surgery.
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!
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?
I have been told the nerve was probably damaged during my surgery. What test or procedure was performed on you to show it was nerve damage? I recently had a CT of the abdomen and pelvic area but my GI Doctor said it wouldn’t show the nerve. Please advise. Thank you
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….
I have the same symptoms. What diagnostic studies did you have? Were you ever told that you may have a post viral infection? Did you have any stomach pain? Excessive belching?Have you had a sleep study?
Have they done a sniff test?
I have been told the nerve was probably damaged during my surgery. What test or procedure was performed on you to show it was nerve damage? I recently had a CT of the abdomen and pelvic area but my GI Doctor said it wouldn’t show the nerve. Please advise. Thank you
Thank you for that info.
Liked by Mimi
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.
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?
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!
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@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!