Anyone had phrenic nerve irritation after TOS surgery
 

I have been complaining to my doc that I have been having trouble breathing and they thought it was just lung inflammation. But after two months they decided to do a chest x-ray and found my right diaphragm is in my chest....YAY! I feel like I am in my third trimester of pregnancy when you can't breathe! So I am not sure if it's fully paralyzed or just not functioning properly. Trying to remain positive but it's a struggle to breathe and it's only getting hotter and more humid here in GA which is making it worse :( So and advice would be much appreciated :))))

I recall mentions of long thoracic nerve injury in the past, maybe phrenic was mentioned too..

You might be able to locate any posts/threads about it by using the search link in my siggy.

Here's a thread on that. http://neurotalk.psychcentral.com/thread41369.html

Pattymary
I too have had issues with breathing. At about 20 months postop I was still having great problems and my chest xray showed that my diaphragm was still elevated......it was last summer & it was awful as the heat & humidity made it even worse.....stayed in with the air going to make things easier.
When my shortness of breath was really bad I found doing the "diaphragmatic breathing" helpful as I usually had major anxiety that was very scary and it seemed to help calm me down if nothing else.

I did have complications with my initial surgery which resulted in 2 further surgeries for Lymph leaks and I also had a large pleural effusion....so my breathing issues were the result of that.
I am now at about 28 months and chest tightness & shortness of breath are apparent when I do too much. I also have great fatigue, light headedness & nausea which now I have been told is likely due to Vagus nerve damage.

Did you have any complications?

chloecasey

I am having the same issue. Mine comes and goes. I practice the breathing technics when this happens which helps. However, rest and sleep for a few hours seems to benefit me more. My PT said it's due to the extreme scar tissue built up and the removal of it caused by the injury and the 6 years I had to wait for the surgery.
I hope you feel better. Stay positive.;)

I didn't have any complications. I have been having breathing issues every since surgery but I thought it was my lung. The diaphragmatic breathing does help. I continue to push, I am putting weights on my diaphragm when I do the diaphragmatic breathing. I have a little weight to loose since I haven't been very active since this whole thing happened.
I am hoping all these things help. I am only two months out from surgery so I still hopeful it will come back. I have had a lot of nerve surgery in the past and my nerves always come back, it just takes time. I am still going to PT and will continue until I am 100 % I am at 90% right now. External rotation of my shoulder from the pec minor release is the weakest. I am going to the doc tomorrow so they can start treating me for some asthma/reactive airway symptoms. Plus I think I am now having congestion in my lung...YAY me!

I tried the inhalers ....did not always help the issues. In my case, the multiple surgeries, likely poor arm positiong in surgery ( which I discovered in my research can cause Phrenic Nerve Injury and even airway complication during anesthesia ) and the "messing with the nerves" and now scar tissue that has led to my ongoing problems. When it affects the respiratory system that is so much more serious in my opinion.

chloecasey and positive mover, can you tell me more about your scar tissue situation--where is it and what is it said to be doing to cause your breathing problems and who & how did it get diagnosed as that?

I have breathing difficulties since my shoulder injury/surgery, known to have a lot of scar tissue, but no one here can explain the breathing problems at all, went for full pulmonary testing, and all I got was "there is nothing wrong with your lungs" (okay, so then why do they just choose not to work sometimes? no answer. "not my field of expertise" then who do I go see? "i don't know, must be muscular")

If nothing else, I would at least like it explained so I know what and why, and they'll quit telling me to "go take a walk". Taking a walk isn't the problem. Laying down is. Bending forward is. Walking and talking is. Sometimes just talking is. Humidity is. Standing and talking is. Trying to find a position between sitting upright and laying down so I can sleep, is. Sitting in the recliner at various "wrong" angles, is. Am well used to just having to consciously breathe at times, but I would at least like to know why.

winic1

Like yourself, I have been told the same things....which is so frustrating!

In my case, the complications from the NTOS surgery required 2 further surgeries. Not getting an honest answer as to why & what I was experiencing resulted in my own search to various doctors and finally asked an opinion of my ENT. Because he "works" within the area of anatomy that is involved with TOS, I felt he may have some answers. In his opinion, because of 3 surgeries there is scarring likely and that has caused the breathing issues (phrenic nerve) and I also have pain at night while sleeping, especially when I do too much that day.

I did look back at your past posts (Dec 2012) where I did respond to one about breathing problems. I too have experienced the coughing where it is definitely not a throat thing....its as if your chest won't move almost paralyzed like. The one thing I have discovered is that because of the breathing issues I have to sleep with a wedge pillow to elevate for easier breathing and other pillows to support my arm and neck. I have pain much like I had before surgery in addition to great fatigue, light headedness, nausea which IMO is the scarring of the nerves.

As far as who to see ....I would think a neurologist? but at this point for myself I am just frustrated about how it is just passed off as not being real or they just don't want to get involved...Will certainly post in future if I find some help!

chloecasey

I sleep on a recliner section of our couch in the living room, packed in with as many as 7 pillows to support the bad arm & shoulder, back, knees, try to keep me on my side all night....it's ridiculous. Wedge on a bed was no longer enough. Some nights, the "just not quite breathing enough" thing kicks in anyway, and it becomes a battle of finding the right angle and propping to overcome the overly slow shallow breathing, but still be reclined enough to be able to sleep. The accident that started this whole mess also, for some unknown reason, left me with a really dry mouth, so sleeping on my back is not an option, I wake up so dry I can't move my tongue or throat to swallow, and then they continue to feel raw all day from being so dried out while sleeping.

I haven't slept flat or nearly flat in over 3 years. Which is certainly not helping the back injuries I had, I never get the pressure off my back because I sleep more sitting than laying.

I would just really like whatever the problem is proven, so I'm not just a nut who needs to go take a walk, or a valium. ("If you worry about things like your breathing and heartrate, they will have problems." Well, I don't worry about them except when they give me problems, and it's not even worrying about them, it's dealing with and counteracting them when they happen, rather matter-of-factly after all this time, AND if they weren't giving me problems, I wouldn't even NOTICE them in the first place, you (insert obscentity here!!!!))

I second that!!.........wonder if they would have a different view if one of their family member or friend had these issues....or maybe even themselves!!

Oh, I am sure they would. Probably the biggest whining crybabies about it, too.

Just got off the phone with a potential new doctor, who, it turns out, is out of network (why do they say, I take XXX insurance as Out of Network, which means you pay me and submit the bills for reimbursement? Do they really think I am so stupid that I don't know that means that they DO NOT take my insurance, that I pay them and that IF I get any money back from my insurance it is entirely up to my efforts and my insurance's cooperation (insurance cooperation--bwaaaahhaaaaaaa!))

So, I tell him I don't have the money to pay, since first I have to go through my deductible, then I only get a percentage back after that. He keeps saying, well, once you get your deductible spent, which will go quickly, you'll be getting your percentage back, that's like $XX dollars coming back. But, mister, I don't have the money for the deductible part. But, he says, you'll be past the deductible in no time. BUT MISTER, I DON'T HAVE THE MONEY TO PAY OUT THE DEDUCTIBLE. OR MY PERCENTAGE OF THE REST. Beyond his comprehension, he only sees insurance checks coming back to me, so what's the problem? The problem is, I don't see any advantage to trusting my health to someone whose mind is so simple and limited. If he ever leaves medicine, he should sell used cars or credit cards.

Just once, a doctor who is a real, reasonable human being. Just once!

What is ur tos Dr saying? How does ur diaphragm end up n ur chest?? Is ur phrenic n.damaged from tos surgery? That's so scary!!!
Hope u get help u need real soon!!

UPDATE

I followed up with my Family doc to get some help with an inhaler and such. He took an x-ray to see for himself. I didn't see the last one they just called me. OMG I couldn't believe my eyes!!!!!! I cried immediately! Basically the top of my diaphragm on the right side is level with the top of my heart. I will try to post the pics I took of the x-ray. I am waiting on a sniff test to see if it is really paralyzed. My doc was upset and is getting my surgical notes and consulting a neuro. Now I am waiting again...LOL The good news somehow my breath sounds are good and equal....go figure!

Pattymary

I also had the elevated diaphragm, in my case it continued to about 20 months.....due I am sure to the fact that I had 3 surgeries in 1 month span and the "messing" with the nerve each time.
Early on I had numerous bronchitis issues and of course last summer was so hot & humid that made things so much worse.....stayed in as much as I could with the air on. I really had shortness of breath especially at exertion and sometimes at rest.

The tests for breath sounds was the same as yours and the Doc said I was having Asthsma issues however I knew there was more to it. Even now when I cough its as if my chest just won't move? ....very tight feeling.
The diaphragmatic breathing does help especially when I get anxious with the shortness of breath.

I would encourage you to try to do the Diaphragmatic breathing, as from what I was told that even when the Diaphragm starts working that it can be weak and not move as it should.

chloecasey

Bless your heart....gosh these new doctors these days sure do give people the run around alot. It has happened to me too.

I learned finally that I have to go to TOS specialist for anything because if I go anywhere else I get the run around....I finally learned that I do not have normal anatomy and other doctors just see me as an alien.

Maybe you can go see a new TOS specialist who has new eyes on the problem......sorry you are having problems.

I did know some TOS patients did need oxygen to be able to sleep at night.....as the nerve healed. I just can't believe that your surgeon did not help you deal with a complication. I am a nurse and it is the surgeons JOB to help you if you have any complications! Gosh that just makes me so mad as these surgeons make tons of money off sick people....the least they could do is help someone who has a complication.

Bless your heart....gosh these new doctors these days sure do give people the run around alot. It has happened to me too.

I learned finally that I have to go to TOS specialist for anything because if I go anywhere else I get the run around....I finally learned that I do not have normal anatomy and other doctors just see me as an alien.

Maybe you can go see a new TOS specialist who has new eyes on the problem......sorry you are having problems.

I did know some TOS patients did need oxygen to be able to sleep at night.....as the nerve healed. I just can't believe that your surgeon did not help you deal with a complication. I am a nurse and it is the surgeons JOB to help you if you have any complications! Gosh that just makes me so mad as these surgeons make tons of money off sick people....the least they could do is help someone who has a complication.[/QUOTE]

Had to write again! sorry if I repeat here I am just mad.....
It just makes me so mad at these doctors for not helping people who they operated on! OMG. I had my surgeries 10 years ago and I knew that some people had breathing problems, that it is one of the complications to the surgery. I also knew that some people needed oxygen therapy so they could sleep well if they did have this complication. I just don't understand why you have to suffer like this. I am just really trying to figure out why these doctors are not helping you poor TOS patients. If you had oxygen at night you would be able to sleep better because you could feel like you can BREATH!! This is just not right!

Also you can get pneumonia and other problems from not breathing good. I am a nurse and I do know a little about this....oh and I am also a TOS patient too. I had cervical ribs and they had to come out so I was not suffering. You should not have to suffer either!

If you had oxygen to help you then you would not feel like you are getting oxygen starved. My gosh how have you been able to not go crazy....with all the TOA stuff and then not be able to breath good.....you can PM me and I will tell you what I really think! UNBELIEVABLE! :mad:

Pattymary, who was your surgeon?

"Maybe you can go see a new TOS specialist who has new eyes on the problem......sorry you are having problems."

I have been to two locals, Yale, Columbia, Mass Gen, and NYU. Enough specialists. They have cost me thousands of dollars, days and days from my life and my kids' lives, and in the end, even the one at NYU who was the only one who spent the time to actually, really, talk with us (hubby always comes along) provided no help as I am non-surgical (vascular TOS caused by scar tissue, bigger risk to operate than leave it). No more specialists. Every time, it opens a little bit of hope, and then it just gets smashed to nothingness. Every other specialist-cardio, pulmonary, neurologist, physio, you name it I've been there, just pushes it off on some other doctor. Round and round I've gone. All it got me was a big case of dizzy and a bigger case of bad attitude.

May every last one of them be treated the same way they treat us by every single person they ever encounter for the rest of their lives. Blessing or curse, it's up to them, and serve them right!