Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hi folks,
I'll chime in here with "were in the same boat" kind of comment. Let me tell you it is something of a relief to read about others with the same problems post surgery. Not because I'm happy you are having them, but happy that my various PAINS aren't just in my head (pun intended).
I think a couple of things to keep in mind is that they call it RADICAL for a reason (and it insn't a hip new term) It's because they are in there digging around willy nilly cutting and such with the idea of getting rid of a very bad thing. The result is we get a long life of minor aches and pains...(ok some are a little more than minor).
I would very much like to hear from a Surgeon who has personally been through this treatment. Then we would have the perspective from both sides (I think they call that bilateral) :p
Another thing that JET AGE Bob said that I found out to be true is that I feel best about 1 to 2 weeks after doing something really physical (like splitting firewood or digging up the garden). It seems contrary when things hurt even when you are laying in bed, but I have noticed this many times. If you have read some of my other posts I have suggested getting up and out and doing something, and that is why . I'd like to hear more about other experiences with this.
By the way it has been 26 months now since surgery and I still have the feeling of tight neck (although I am able to turn right and left pretty well), the remaining tendons and muscles seem to wind up like guitar strings and need GENTLE stretching (if you stretch too hard they get worse), strange painful areas (some are in my scalp oddly) that come and go, a sensation of swelling, (sometimes I actually can see swelling sometimes it is only a sensation), And my shoulder sometimes hurts badly. All of these problems I can live nicely with if it weren't for the fact that every little thing makes me wonder...(you all know what I mean don't you) and that is the BIG problem. Keeping that mind under control, reminding myself that it is the 1000th time that same little pain has come and gone...NOW THERE IS OUR GREATIST CHALLENGE!
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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