Would like to know if anyone has experienced lymph leak complications after surgery that required re-exploration (mine was x 2) and have additional complications as a result
* neck and chest tightness when laying down even with being "propped up" and also with exertion.
* bad cough that is almost like chest is "paralysed and tight"
* strange facial sensation and numbness on operative side
*Horner's Syndrome- droopy eyelid, pupil that does not dilate like other eye, and no sweating on that side of face
* light headed, nausea.....very very fatigued
* strange sensation when moving fingers over surgical site.....as if something is disconnected, feeling senastion "above" the area where you fingers are moving below
* pain on operative side even though only being able to lay on non-operative side.....very "achey" especially when overdoing use during the day

I have been told by other Doctors that it is likely permanant nerve damage being that over 2 years have passed.....just wonder if anyone has had similar experience.

Thanks chloecasey

I'm really sorry to hear you're having all these problems. I had chest tightness that made it hard to breath, tightness and pain in neck (like something was grabbing when I moved), fatigue, headache, diaphragm disfunction following surgery, but not the other things you mention.

How long has it been since your surgery? Things may calm down if you're still early in your recovery. It took me two months to recover from surgery, followed by 3 weeks of lower pain and then it all started ramping back up and then some. I'll keep my fingers crossed that this is a really irritating and frustrating -- but, hopefully, temporary -- bump in the road.

Kellysf,

It has been over 2 years and majority of symptoms have been ongoing from the beginning and just worsened, like yourself. Yes, very frustrating....another Doctor I saw stated in his opinion it is nerve damage (from 3 surgeries 10 days apart) that will likely be permanent and does not feel there is anyone or anything that would change things.
Thank You for thoughts chloecasey

After I had posted, I read through some of your earlier posts and saw that quite a bit of time had passed since your surgery. It is, indeed, very frustrating. I would go back in a heartbeat to my pre-surgery self. But who knows, maybe I would have worsened without surgery, too.

The one thing I do feel certain of is the fact that neurogenic TOS is very poorly understood. The notion of compression and freeing up space just seems to be ineffective in too many cases to be cast as a real solution.

It's been ten years for me now since this journey began and eight years since my surgery. I have a few days a month where I can take a 15-20 minute walk or take a drive. Today was one of those days and I was very thankful for it. Otherwise, my life is very small and contained. I don't think the surgeons have a good idea how debilitating this condition is. I'm lucky to have a very supportive partner and children who fill my life with a great deal of joy. I can't imagine how hard this would be if I were going through it alone or with someone who didn't understand.

I wish you the best.

Kelly

PS I forgot to mention that I do have intermittent facial numbness and pain in my left ear, lower jaw and cheekbone.

Thanks for your response. I am fortunate I have great support as well although I am sure my previous life prior to surgeries would be welcomed so much more......so difficult to express/show what you are going thru when there is no real "visual" evidence.

Wishing you well also chloecasey

I am almost 2 years post surgery, and I am finally doing a bit better. I do exercises and stretching everyday and have slowly returned to being able to do more functional living. There is still a lot that I can not do or things that cause pain, but my life has slowly improved. Be patient and positive and at least continue with your stretching. I also go for a massage once a month, where the therapist does active isolation stretching with me. I have found this to be very beneficial.