Phrenic Nerve Injury – David’s Story

 

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.

DavidPowell400Injuries 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.”


@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!

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Thanks Kelly. Yes that makes sense. And people come from overseas to one of them. Cost is scary.

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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!

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I had a sleep apnea test done years ago, but not recently. My partner suggests my breathing during sleep is better than during the day. I often sleep on my arm and maybe that crunches my neck and not good for the phrenic nerve.

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Hi Guys,

I had a cervical epidural on March 3rd of this year 2018 around 8am. As of midnight that night, I have been having the hiccups. Just under a day from 9 weeks now. I have been to the ER and Urgent Care numerous times and they keep telling me that whatever it is will heal on it's own. I am a Kaiser member by the way. However it has been getting wort; restless nights, throwing up 2 to 3 times a day, feel dizzy, feel like I will throw up when bending over, getting tired while standing and making simple meals in the kitchen.

I have been taking all the nerve and hiccup medications known to the doctors and even went to the GI doctor where they saw nothing and the biopsy test came back normal.

I personally believe that they damaged something during that injection and maybe scared to say so and praying it heals (hiccups stop) on its own. But I don't see it going away. My stomach hurts, throat hurst, and I throw up most times after eating and also without eating or when I am bending over to give my 4 year old a bath. Not to mention not being able to catch my breath several ties a day. I even throw up water sometimes.

Did a lot of reading on my sleepless nights and finally came across the phrenic nerve and then this post.

Any advice? I am suffering from these hiccups all day everyday.

Ryan Flowers

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For the last two years, I have been waking at 2 am by Disordered Breathing. When lying mostly flat, I pant, have pauses, catch, labored breathing. When I walk around, it returns to normal after awhile. It was a sudden onset with left sided neck, shoulder, arm, scapula, lower rib, pain, numbness, face, burning. The The disordered breathing worsens with excercise. It is also associated with pain, spasms between my shoulder blades on the left side and radiates to my upper abdomen which worsens when I lay on my left side.

I believe that this may be brachial neuritis and specifically, phrenic nerve irritation. My doctors are clueless. 2 questions:
Is there a specialist in the Petaluma, ca area? If the disordered breathing happens at night, will a sniff test rule out phrenic nerve irritation?

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@karencann

For the last two years, I have been waking at 2 am by Disordered Breathing. When lying mostly flat, I pant, have pauses, catch, labored breathing. When I walk around, it returns to normal after awhile. It was a sudden onset with left sided neck, shoulder, arm, scapula, lower rib, pain, numbness, face, burning. The The disordered breathing worsens with excercise. It is also associated with pain, spasms between my shoulder blades on the left side and radiates to my upper abdomen which worsens when I lay on my left side.

I believe that this may be brachial neuritis and specifically, phrenic nerve irritation. My doctors are clueless. 2 questions:
Is there a specialist in the Petaluma, ca area? If the disordered breathing happens at night, will a sniff test rule out phrenic nerve irritation?

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A sniff test, in my case, confirmed a paralysed diaphragm (as mentioned by other people here). I have seen a neurologist recently who confirmed a phrenic nerve problem by performing a nerve conduction test.

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@karencann

For the last two years, I have been waking at 2 am by Disordered Breathing. When lying mostly flat, I pant, have pauses, catch, labored breathing. When I walk around, it returns to normal after awhile. It was a sudden onset with left sided neck, shoulder, arm, scapula, lower rib, pain, numbness, face, burning. The The disordered breathing worsens with excercise. It is also associated with pain, spasms between my shoulder blades on the left side and radiates to my upper abdomen which worsens when I lay on my left side.

I believe that this may be brachial neuritis and specifically, phrenic nerve irritation. My doctors are clueless. 2 questions:
Is there a specialist in the Petaluma, ca area? If the disordered breathing happens at night, will a sniff test rule out phrenic nerve irritation?

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All is not lost…. my phrenic nerve issue cleared up all on it's own. It just simply went away without any explaination or anything being done to it.

 

Sent: Monday, June 25, 2018 at 2:58 PM

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@karencann

For the last two years, I have been waking at 2 am by Disordered Breathing. When lying mostly flat, I pant, have pauses, catch, labored breathing. When I walk around, it returns to normal after awhile. It was a sudden onset with left sided neck, shoulder, arm, scapula, lower rib, pain, numbness, face, burning. The The disordered breathing worsens with excercise. It is also associated with pain, spasms between my shoulder blades on the left side and radiates to my upper abdomen which worsens when I lay on my left side.

I believe that this may be brachial neuritis and specifically, phrenic nerve irritation. My doctors are clueless. 2 questions:
Is there a specialist in the Petaluma, ca area? If the disordered breathing happens at night, will a sniff test rule out phrenic nerve irritation?

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Hi.
How long after on-set did it go away? Any idea how much use of your diaphragm/lung you have now?

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Any help/advice would be so greatly appreciated. My father had knee replacement surgery and developed hiccups the same day. This only got worse as now he has stomach spasms and can’t wven speak without his speech becoming disputed by pressure coming up. His breathing and eating has become affected. So far emergency room doctors have not been helpful and have tried to treat hiccups. I suspect there is a great deal more going on here and after reading, possibly ohrenic nerve damage. How can this happen as a result of knee replacement surgery and which doctor should he see to diagnose and treat this? Thank you all!

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@stacy123

Any help/advice would be so greatly appreciated. My father had knee replacement surgery and developed hiccups the same day. This only got worse as now he has stomach spasms and can’t wven speak without his speech becoming disputed by pressure coming up. His breathing and eating has become affected. So far emergency room doctors have not been helpful and have tried to treat hiccups. I suspect there is a great deal more going on here and after reading, possibly ohrenic nerve damage. How can this happen as a result of knee replacement surgery and which doctor should he see to diagnose and treat this? Thank you all!

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There are test that can be done to see if the diaphragm is moving correctly called a sniff test (fluoroscopic x ray) that would determine if the phrenic nerve was damaged. I would seek advice of a pulmonologist they would be able to order those test.

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@stacy123

Any help/advice would be so greatly appreciated. My father had knee replacement surgery and developed hiccups the same day. This only got worse as now he has stomach spasms and can’t wven speak without his speech becoming disputed by pressure coming up. His breathing and eating has become affected. So far emergency room doctors have not been helpful and have tried to treat hiccups. I suspect there is a great deal more going on here and after reading, possibly ohrenic nerve damage. How can this happen as a result of knee replacement surgery and which doctor should he see to diagnose and treat this? Thank you all!

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

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I have a right hemidiaphragm, recently confirmed by Xray, CT & sniff test. I had CABGx3 in 2012 and PFT in 2014 showing normal pulmonary function. In 2016 I was dx with CSA and I’m on ASV. Most recently my PFT is about 1/2 normal with presumed Phenic nerve injury, per my pulmonologist “as likely as not” caused by the heart surgery.
My thought is that the nerve was damaged by an instrument or ice slush and since scarred over, cutting the signal to my diaphragm.
EMG is next.
All the shortcomings and indignities others have mentioned I share: quick fatigue, gasping getting into bed, short of breath, sitting positions hard to find comfortable, difficulty bending to don sox or tie shoes, and on it goes.
Plus, I’m a 72 yr old Viet Nam Agent Orange vet in the midst of my Golden Years. I’m alive and grateful every day. Glad to find a group with a common issue.

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I've been having terrible problems. I can trace it back to a time i drank too much and passed out on my arm rest on my couch. Lol nice i know. But it was probably poking me all night. Does anybody think that i could injure my phrenic nerve like this? I had terrible shoulder pain for about 10 days after. Help!!

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