Quote:
Originally Posted by winic1
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.
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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