Tami Posted January 21, 2009 Share Posted January 21, 2009 It's been a while since i've posted. But I do read all the time. I've been having some issues and I can't seem to get any answers I'm hoping that you guys can give me some guidance. I seem to be hanging in there no terribly major issues. I no longer see an onco and haven't for ages. Just my regular PCP. My lung and other junk was removed years ago and I don't really have too many issues with breathing except that I do live in PA and with the recent cold weather/asthma it has been causing more problems. That said.. I am having a new problem that no one seems to be able to figure out. I have a burning pain/pain that comes and goes. It is intense when it happens and it's getting more frequent. I used to get it more when I was out in the cold, doing something etc. but now I'm noticing it in the house when I'm rushing around etc. It's an intense kinda burning pain that seems to go up my bronchial tubes (middle of upper back), out towards the shoulders/collarbone. even a tingling down my hands. It hurts alot but after a 5-10 minutes it seems to go away. about a year ago and off and on since then I've also had my hands, face turn white or blue.. just off and on a couple of time. My PCP physican ordered a ultrasound of my heart. nothing. xrays-nothing.. nothing is showing up anywhere. Nothing seems to fit and they can't quite figure out what's causing it. It's not like a heart attack or GERD or anything like that. Has anyone out there had anything similar?? Searching the net (which I know can be dangerous) I did find something called Thoracic outlet syndrome. There are a couple different types, one is neurogenic and it sounds like it's possible. It involves the brachial plexus nerves.. it also mentions the hands turning white. Although one symptom is pain it doesn't say burning pain.. this is an intense pain. not a dull ache or anything.. i can't describe it any other way than burning. It also involves the collar bone and I do have some issues with that area. Anyone been diagnosed with this? Heard anything about it?? Considering that I had 4 chest surgeries prior to the pneumonectomy,(plus rads and chemo) my original tumor was in the left bronchial tube.. it seems like they would have considered this? Given my history? But maybe the symptoms don't really match?? If anyone has heard or experienced this I sure would love to hear your experience. Thanks. Quote Link to comment Share on other sites More sharing options...
Nick C Posted January 21, 2009 Share Posted January 21, 2009 PCP is fine, but sometimes not the one to speak to...can you go get an appt with a pulmonary doc? Quote Link to comment Share on other sites More sharing options...
Patti B Posted January 21, 2009 Share Posted January 21, 2009 Tami- I agree with Nick - maybe you should see a pulmonologist about this one. I have heard about thoracic outlet syndrome but don;t know any details about it. Good luck - let us know if you find out anything. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
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