Hi, Flip.
I started having severe cramping / charlie horse type spasms in my neck, under my jaw, and behind my head at the base of my skull (starting about 2 years ago). This past year and after a lot of appeals to my insurance company, I have started receiving Botox injections to these areas. The doctor does one side at a time because of the potential for undesired side effects such as problems with speech and swallowing and head drop. Fortunately one of my sides is much worse than the other so this doesn't bother me. I have to tell you that these Botox injections have been a godsend. I see a doctor who is in the palliative care department of my Comprehensive Cancer Center and he also works in the pain management clinic in the main hospital. The spasms are very common in the areas that I described and that you may be experiencing yourself. It's common for them to be a latent effect radiation treatment to the head and neck. You are not alone and there is help for these spasms which are debilitating to say the least. I hope this message helps you find the care that you need. Please feel free to send me a private message if you need more information.
Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!