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!!!!))