January 20, 2015

Phrenic Nerve Injury – David’s Story

By uclahealth

 

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.”

Tags: Dr. Matthew Kaufman, Dr. Reza Jarrahy, patient stories, plastic and reconstructive surgery, Surgery

@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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Just to correct the statement I made I live in the state of Arizona which is about 350 miles or 560 km from UCLA medical Center in California that is where they are repairing the Phrenic Nerve for me that is only a 6 hour drive or 1 hour flight. I would first verify if possible though imaging what the problem is with the nerve some have scar tissue pressing on it only needs to be removed to release the pressure that is something I think a local doctor could do. Also you can see a neurologist who can do a test to find the place where the nerve is damaged. Unfortenlty it's this problem isn't common enough, and most people just live with it. I read in another thread someone had just stopped doing things that he needed lot of lung capacity for like singing or hiking in the mountains. I read a study on Diaphragm Plactate only has about 15-18% improvement of lung capacity one has to weigh the options of that risk vr reward the consult I was given a surgeon who I was told that has done many of these they admitted usually not a good option until the it's impacting ones life much more then it is now for me that is why most do it later in life. As far as weight goes yes I can say it's gotten worse as my weight went up like you it's a constant battle when I stressed I tend to eat lot more food. It's been very difficult to stay focused on eating correctly. One thing I will say is don't get discouraged about gaining half back on just try to start the next day again and get back to the diet and exercise even if I have a bad day of eating I go the gym I don't feel bad about it at least I did something.

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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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Thanks Kelly, interesting read.
I will follow up with the neurosurgeon about scarring pressing on the nerve.
One extra factor I find is that I now get very tired at times, and don't often get up feeling refreshed. I don't whether that's my age (60s), type II diabetes, consequence of radical prostatectomy surgery last year (March) or this breathing issue – and probably all of the above.
But it's also darn hard to push oneself to do something like spin bike exercise with the huff and puff breathing and being tired, but as you suggest, I will, as it works on the weight.

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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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A question please. I tried to write (email) to Dr Kauffman and I got a reply back from someone at The Institute for Advanced Reconstruction, which is New Jersey. The other side of the states. May not be anything wrong with that. How do I contact the Phrenic Nerve people at UCLA?

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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!

Jump to this post

If you read above it explains Dr. Reza Jarrahy is the doctor who does the surgery at UCLA he was trained by Dr Kauffiman that way they have one person on each coast.

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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!

Jump to this post

Have you had a sleep study to find out what your O2 levels are while sleeping I snored for years probably because of this issue and weight gain but didn't know I was only getting 78% oxygen at night doctors said under 80% can have a stroke or cardiac arrest. That's why I would wake up headaches. If your not sleeping well need to get a sleep study find out why I use a CPAP while it took a year to learn to sleep with it on helps a lot.

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@shelliecurry

Wondering if anyone is still reading this post? I have same issue, and sniff test shows a paralyzed diaphragm. No injuries that I can recall. Have had two bouts of Parsonage Turner syndrome. Has anyone found any physicians that understand this problem?

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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.

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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!

Jump to this post

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!

Jump to this post

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

COMMENT

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?

Jump to this post

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?

Jump to this post

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

COMMENT

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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