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 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.
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!!
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!!
When you say Terrible Problems are you referring to breathing? If that's the symptom you need to have a xray and if the diaphragm is elevated they will do a sniff test. That test will tell you if it's moving or not both are simple test nothing more then an xray machine. Once that is diagnosed not moving you go to a lung doctor they do a PFT test measure your lung capacity. I'm at that point my PFT is 99% normal so no surgery is recommended I just need to keep my weight down.
I've just been told I have some form of restricted lung disease . I've had chiropractor care in 1985 and had shortness of breath and severe pains in left rib cage. It's been years . I'm on 3600mg of neurontin and still in pain. I had a stroke I believe in 1985on the left side but all of this started with pain and parelisis in left rib. I never had a stiff test. I'm affraid I'm struggling with breathing in and out now . Please help this has been going on for to long.
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?
Hello Mimi and sorry for asking after such a long time from your post, but i recently also had to go to the internet for my symptomns similar to you and the david of the article. My pulmonologist refuses to acknowledge my problem may be caused by something other than my being over weight. The best i got was a reading of blood oxygen saturation using those things they clamp on your index finger, which showed good numbers (97 i think). May i ask if you had the same test and if the result was also good? If so it might support my hyphotesis. Sorry for mistakes, english is my second language
Hello Mimi and sorry for asking after such a long time from your post, but i recently also had to go to the internet for my symptomns similar to you and the david of the article. My pulmonologist refuses to acknowledge my problem may be caused by something other than my being over weight. The best i got was a reading of blood oxygen saturation using those things they clamp on your index finger, which showed good numbers (97 i think). May i ask if you had the same test and if the result was also good? If so it might support my hyphotesis. Sorry for mistakes, english is my second language
Hello Herose
When I was first diagnosed with the phrenic nerve palsy and after a CT scan, I spent a night in hospital they kept testing my blood oxygen saturation and at times that night it was as low as 80 and beeping! Indicating I needed urgent attention and/or dieing. Even that didn't cause the nurse at the time to run though. During that night it varied from the 80 up to 90. Thereafter, and after a MRI scan, and about a fortnight later, I was getting readings of 90, maybe 92. Two years later I'm at 95 pretty consistently. So a reading of 97 is bloody good. No sure what that does for your hypothesis.
I have had lots of tests, and basically each one twice over. Some discussions with Dr Kaufman. I'm waiting to hear from the Dept of Health here whether I might qualify to have the procedure. So lots of touching wood.
Not sure what all this means for your hypothesis.
Hello Mimi and sorry for asking after such a long time from your post, but i recently also had to go to the internet for my symptomns similar to you and the david of the article. My pulmonologist refuses to acknowledge my problem may be caused by something other than my being over weight. The best i got was a reading of blood oxygen saturation using those things they clamp on your index finger, which showed good numbers (97 i think). May i ask if you had the same test and if the result was also good? If so it might support my hyphotesis. Sorry for mistakes, english is my second language
HI all you need is a simple xray of your lung if the radiologist report shows elevated diaphragm did you ever get an xray? I was first diagnosed by a regular General Practitioner wasn't until much later that I decided to see a pulmonologist. Being overweight depending on how much that can cause breathing issues because of the amount of fat below the diaphragm. I would suggest you follow their advice and lose the weight be surprised how just 20 lbs loss will make you feel.
Hello Herose
When I was first diagnosed with the phrenic nerve palsy and after a CT scan, I spent a night in hospital they kept testing my blood oxygen saturation and at times that night it was as low as 80 and beeping! Indicating I needed urgent attention and/or dieing. Even that didn't cause the nurse at the time to run though. During that night it varied from the 80 up to 90. Thereafter, and after a MRI scan, and about a fortnight later, I was getting readings of 90, maybe 92. Two years later I'm at 95 pretty consistently. So a reading of 97 is bloody good. No sure what that does for your hypothesis.
I have had lots of tests, and basically each one twice over. Some discussions with Dr Kaufman. I'm waiting to hear from the Dept of Health here whether I might qualify to have the procedure. So lots of touching wood.
Not sure what all this means for your hypothesis.
Hi Peter M,
My problems started after a subclavian carotid bypass to create a new blood supply for my left arm prior to extensive stent work to repair 2 holes in my aorta. During the bypass my Phrenic nerve was "nicked" about a week after the stent surgery I had a coughing fit and I believe my phrenic nerved snapped. prior to that I could walk 3 laps of the ward with no issues after I couldn't do half a lap without stopping to get my breath. That was last August and I'm still waiting to see a lung specialist October 2020 being the first available appointment and now with what is going on it could be longer. An Xray shows elevation of the left side of my diaphram with my stomach pushing the diaphram up with a "gas bubble " forming in my stomach pushing up further. I can walk on a level path but not walk and talk, and even the slightest incline leaves me gasping for breath. I can't even carry a bag of groceries and for the fist time in my life I have to pay someone to service my vehicles. My GP is of the impression I'm as good as I'm going to get but as I havn't seen a specialist I'm not sure what the future holds but I wish there was someone doing Phrenic nerve repairs in Australia as I'm certain my flying days are over. best of luck everyone!
Hi Peter M,
My problems started after a subclavian carotid bypass to create a new blood supply for my left arm prior to extensive stent work to repair 2 holes in my aorta. During the bypass my Phrenic nerve was "nicked" about a week after the stent surgery I had a coughing fit and I believe my phrenic nerved snapped. prior to that I could walk 3 laps of the ward with no issues after I couldn't do half a lap without stopping to get my breath. That was last August and I'm still waiting to see a lung specialist October 2020 being the first available appointment and now with what is going on it could be longer. An Xray shows elevation of the left side of my diaphram with my stomach pushing the diaphram up with a "gas bubble " forming in my stomach pushing up further. I can walk on a level path but not walk and talk, and even the slightest incline leaves me gasping for breath. I can't even carry a bag of groceries and for the fist time in my life I have to pay someone to service my vehicles. My GP is of the impression I'm as good as I'm going to get but as I havn't seen a specialist I'm not sure what the future holds but I wish there was someone doing Phrenic nerve repairs in Australia as I'm certain my flying days are over. best of luck everyone!
If the nerve can be grafted it's best to not wait if you can fly to the US and have the nerve repaired asap will have the best outcome.
If the nerve can be grafted it's best to not wait if you can fly to the US and have the nerve repaired asap will have the best outcome.
Have you had your nerve repaired Kelly?
Have you had your nerve repaired Kelly?
No I didn't because I was told in 2011 not to worry about it since didn't seem to bother me. What I didn't know at that time was as time passes the diaphragm muscle tone atrophies and over the years it starts to push up farther into the lung. It just been too long to have the graft. I can get plictation done where the pull the diaphragm down, but that even should be done sooner not later before the muscle gets so thin. If you can't get the nerve graft in Australia I would look into the plication it has helped many people and they should offer that to you. We have a facebook group called https://www.facebook.com/groups/ParalyzedDiaphragm find out more information there
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!
Hi stacy, I know it’s been awhile since your dad’s surgery, but what did you find out? My husband had open gallbladder surgery and has the exact same symptoms as your dad. Thanks
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@mclweaver
Yes, @kellyle is correct. Ask his doctor to order a "Diaphragm Flouroscopy. I think that test would give you some answers. Good luck!