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.”


@slindley482002

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

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Thank you!

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@mclweaver

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?

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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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A special X-ray called a “Sniff Test” will show if the diaphragm is paralyzed. My lung doctor set it up. Good luck and health to you.

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Anyone have more info on this?
Wondering whether cervical stenois and degenerative disc disease can cause phrenic nerve injury resulting in hemidiaphragm paralysis or it was the nerve block.
If it was the nerve block, does it mean the guy screwed up or is it just one of the “normal” risks?
BTW, my symptoms sound just like all of yours. They diagnosed me using the sniff test.

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@muttshuttler

Anyone have more info on this?
Wondering whether cervical stenois and degenerative disc disease can cause phrenic nerve injury resulting in hemidiaphragm paralysis or it was the nerve block.
If it was the nerve block, does it mean the guy screwed up or is it just one of the “normal” risks?
BTW, my symptoms sound just like all of yours. They diagnosed me using the sniff test.

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I have M.A.I that was diagnosed 6 years ago. I have been on 4 daily antibiotics since then and it seems to be just holding the disease at bay and is not curing it. My chest specialist says that I will probably expect this to be a life long issue as the disease is well situated in my case.
Last April I suffered quite a lot of bleeding from my lung and was admitted to hospital. I had ablation surgery (procedure) via my groin to access the area of bleeding via an artery to seal the area of the bleeding.
Since I came out of hospital, I have had many instances of shortness of breath… gasping for air after bending, squatting, stretching up etc. I have read up on the subject and it seems that my Phrenic Nerve is responsible when it gets irritated.
When this is happening, the gasping, I have found that patting around my diaphragm area helps me recover better and allows me to get my breathing back under control.
Is there any further information you can give me about this and is it possible to alleviate it?

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My lung doctor sent me for a sniff test (special exray which is shown on a monitor). It was determined my right diaphragm was frozen in place. So, I cannot inhale or exhale with the right lung. I assume it was Phrenic Nerve damage during surgery after a tech suggested it was during a recent interveinness stress test. Hope this helps. Sorry but what is a M.A.I.?

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MAI is Mycobacterium Avium Intracellulare… a lung disease of the TB family but it is not infectious to others like TB can be.
I have only just found out about this Phrenic Nerve issue and am quite eager to learn about it and if I am stuck with it or if there is a cure. When I get out of breath which happens after the smallest effort and I sit down or bend I get this partial paralysis of the abdomen which clears when I get my breathing rhythm back to normal, which is not long normally, but is sufficient to have me panicking and struggling to get air and get my rhythm back.

And yes, there are two nerves, one left and one right.
I do not have a paralysis of the left or right but it is more a case of one or both of the nerves being under stress when I bend etc and compress my diaphragm when I am breathless.
I really have to be mindful and try not to bend or anything like that.
The only way that I can try to explain it, it is like a massive panic attack where you can’t get your breath.

It will be another 4 months before I get to see my specialist again and want to be able to find out as much as I can before I see him.

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David I have had A paralyzed L Phrenic nerve and diaphragm for all most a year. Doctors guess that it is from a post viral infection??. I am 69 female. Have you had a sleep study, you may need one.Mine showed that when I sleep on my side my stomach presses on my diaphragm and my oxygen saturation level drops significantly. So I sleep with oxygen at higher elevations but don’t need it at sea level.I have the same discomfort and panic when I bend over. There are some exercises to do.Do you have a pulse oximeter ? You probably need one. Eat 6 small meals and do not go to bed atleast 2 hrs after your evening meal. You may need to sleep with head elevated.. But first you need a diagnosis. Wish you well

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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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@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 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

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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 there – did you find any diagnosis yet? I’ve been searching a lot of websites and this comment you wrote stuck out to me. “Starts from my gut” is the sensation I have, whereby I can feel a very intense heartbeat going from my belly button up to my heart, almost like the nerve flow is “stuck” and cannot flow properly. I gasp for air all day long at work and have been dealing with this for 7 months. For me, the only possible connection I’ve found is a bad L5 disc herniation that is confirmed to be blocking nerve pathways. That said, I am told by every doctor that those nerves wouldn’t cause shortness of breath 🙁 For anyone reading this, how do you get tested for a paralyzed diaphragm, and is the “sniff test” the only way? This is thru a Neurologist, right?

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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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Simple test called a Sniff test where they watch your diaphragm move while your breathing with an xray machine kind of like a video instead of a still picture. They have you breath deeply though your nose that is why it is called sniff test. The radiologist will watch your diaphragm move both sides should move down at least a few inches. I had been told I have an elevated right diaphragm for last 10 years but doctors didn’t seem to think much about it. I wanted to find out why so they had me do the sniff test and sure enough my right diaphragm is paralyzed not moving at all. If yours is moving you do not have any problems with your Phrenic Nerve. Doctors would have seen the elevated diaphragm the muscle is not working so it just pushes up into the lung.

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