lymphedema, scar tissue, muscle spasms after treatment


I've had severe lymphedema pain (and ongoing treatment for it), but now the therapist is working (painfully!) on scar tissue in my neck To top those two, my pain doctor has diagnosed severe muscle spasms and referred me to a neurologist (who cannot see me til January 11) for botox. Has anyone gone through any or all of this? I feel like I'm dangling from a rope. I stopped taking high powered pain meds when my husband got so sick, but the severity of this pain doesn't get me the way it just keeps on does.

Please share experiences. Thanks - have first post treatment PEt next Tuesday and quake at the thought.


  • Curlyn
    Curlyn Member Posts: 189
    Hi, I had SA nerve sacrifice,

    Hi, I had SA nerve sacrifice, scm muscle removal, and only the internal carotid left in my right neck. Pain was and can be hellish ( hot poker in ear, tooth nerves all screaming lower right side, head in a vice every morning, etc). But when I started chemo, the steroids relived that pain while I dealt w/ chemoradiation effects. I just finished chemorad so some pain has come back and I have to work on it forever. However, I did all of the shoulder exercises, set myself up with a good physiotherapist, and lofting small wts again, and it's helped. Lessened. Can't ignore it for long long. Some say Lyrica, when needed, helps. There is also an excellent thread on superthread. Not sure what your surgery involved though. Good luck, don't ignore it. Hugs!