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.”


I have had elevated right diaphragm xrays since 2009 I remember that year when I went skiing I wasn’t able to get enough air which I had no problem before that. It seems something happened which caused me to end up with a Phrenic Nerve damage I just got a sniff test and sure enough it’s not moving. Now as I get older 48 I’m having more problems with it just scheduling with pulmonary doctor now. I want to see if there is way to repair the problem I have never had any surgery except to my knees.

REPLY
@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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Hi. I seem to have similar symptoms to David and Kelly.
I have had a scan, MRI and the sniff test.
The diaphragm does not move on the right side (upwards a cm during the sniff test).
Possible/probable cause has been put down to irritation to the phrenic nerve during an intense practice race during dragon boat training early November. I did see a GP about a saw right shoulder earlier in the day. 14 days later on a hot day I was gasping and having some trouble breathing. In between I had been swimming and a dragon boat race of some 7 km.
The next day after the hot day I was sent to a public hospital and kept in till the following afternoon. I have an appointment with the respiratory head honcho from there in April. Yes 6 months later.
My GP has sent to a different respiratory specialist. He is a reluctant to recommend surgery, although he has talked about a procedure that would tie the diaphragm in place, at the lower position. But he suggests giving it some months before getting to that point. I saw him last week and my oxygen level had improved and was into a normal range.
I have also been seeing a physio and been trying to do some exercises.
I was due to have a procedure to correct long term incontinence from a radical prostrate operation last year but that has been put on hold because of infection risk. I was also getting to a point of having a procedure done to both of my knees after waiting and coping for more than a decade.
I also wonder whether the way I sleep affects my neck and the phrenic nerve. I am round shouldered as it is, and I tend to sleep on an arm. I have bought a new pillow but it is still not quite high enough.
Some days, or parts thereof, I don’t notice my breathing. Other days I do. My neck hurts more at times as well. One job I do involves walking outdoors. Exercise has difficulties between the breathing and incontinence. Trying some spin bike riding and swimming. Not tennis yet (and dragon boats has gone for good).
Any suggestions as to what is possible would be greatly appreciated.

REPLY
@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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HI Peter I saw your post so since my last reply last week I saw a pulmonary Doctor she said because of my diaphragm is so pushed up into my lung it's taking up space my lung capacity test shows not normal. She referred me to a surgeon who does surgical plication of the diaphragm I'm guessing they cut the muscle in a way that it no longer pushes up but if I get that done the nerve even if fixed will not move that muscle again. I tried to talk to her about the repairing the nerve she just shook her head interrupted me said this is the only way to fix it I didn't like her much she is a personal friend of my GP I told him she doesn't even talk to you just talks at you. I doubt she ever heard of the Phrenic Nerve being repaired at UCLA. If that is the surgery they want you to get I would look into getting the nerve fixed first if that doesn't work then do the other. She said she had good results with 2 other patients who had it done admitted both of them were in their 70's I told her I'm very active person. She also said if you stay thin with less body fat that helps with allowing the other side of your diaphragm to move it easier. I have gained some weight I'm working on losing it now I'm in Arizona so UCLA isn't far for me to travel I'm going to look into the nerve repair first. I'm still waiting for MRI my new insurance company must be managed by Canadians where you wait 6 months for an MRI.

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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! 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.

REPLY
@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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What makes you think there is a problem with your Phrenic Nerve if you passed the Sniff test and they saw it move the required distance then that isn't the problem. Have you had lung function testing where you breath into a device that measures how much air is going in and out of your lungs?

I wonder if they can do the fluoroscopic exam while try to bend or move in a way that causes the shortness of breath maybe the nerve is being pressed somehow during that movement have you asked them to test while doing that. If your getting push back from doctors find another who will try to work with you.

REPLY
@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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Hi Kelly
Thanks for the reply/posting.
I live in Australia so the possibilities of a nerve surgery in Arizona are pretty remote. Although I have read about a gentleman from Geelong, Victoria, Australia who travelled to Arizona to have the surgery done, at huge cost.
Since my posting I have seen a cardiothoracic surgeon who explained the procedure to placate the right side of the diaphragm in place at the lower position so that one gets my air into the chest cavity. He has performed this procedure six times and in three of these the people have reported improved outcomes. Not encouraging odds admittedly. And I agree that it is logical to try and have the nerve surgery performed first. The cardiothoracic surgeon was open to and indeed quite encouraging me to see a neurosurgeon first to see what could be offered in terms of the nerves, although he also explained that all the meanwhile the lungs and ribs are scarring away.
I have UCLA and they have sent me a questionnaire. I have an appointment with a neurosurgeon, so crossing fingers. There are only six of these guys locally, in Adelaide, Australia.
I agree it would help to lose weight – my life battle, although I lost mega seven years ago. Half back on. Nevertheless, it can be done.
Peter

REPLY
@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

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.

REPLY
@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, 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.

REPLY
@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

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?

REPLY
@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.

REPLY
@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.

REPLY
@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?

Jump to this post

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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