Post-Treatment > Facial Issues

Hemifacial spasms starting 9 years post radiation

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rebeccagreenberg:
I had surgery almost 20 years ago and stereotactic radiosurgery 9 years ago for regrowth, and had seemed to be doing fine until four months ago, when I started having hemifacial spasms. An MRI showed no changes to my AN, and the neurologist said while it was unusual for these spasms to start this long after radiation, she felt that was the cause. Some days I don't have any spasms, other days I have small contractions/quivering on my face and under my eye, and other days they force my eye to close and go all the way to my throat. I'm wondering if these are AN-related or caused by something else. The neurologist who did the radiosurgery has retired, this new one hasn't returned my follow-up phone calls, and I don't know who else to see.

Thanks for listening and I welcome any suggestions.

Rebecca

MarlaB:
Hi Rebecca,

I don't have an answer for you, but I can tell you my experience and you can let me know if yours is the same.
I had spasms for years before my tumor was discovered. I did A LOT of self-care right after the diagnosis, and for years after. It's been more than ten, and I've gotten out of my self-care routine. And, coincidentally, I recently started having them again, under my left eye. The more I focus on being aware of the twitching, the more it twitches. Now I try to reinstate my relaxation stuff, and do restorative breathing. Of course, if this isn't your experience, and you don't receive a callback soon from the neurologist, can you find another one? Do you have one of those local registries for specialists in your area? Some of the registries will let you look for providers by specialty AND miles willing to travel!

rebeccagreenberg:
Hi Marla,

Thanks for your reply and your thoughtful suggestions. So sorry to hear that you experiencw these spasms too.

I've been fortunate that I never had spasms either before or after my surgery or radiation; they started four months ago, and I'm not even sure they're related to my AN, though it does seem coincidental they're on the same side of my face. You sound a lot like me: I try to meditate daily and not think about these spasms. They happen at different times: when I first wake up, in the shower, when I'm talking with people.... I'm retired and don't feel stressed, though you could sense my frustration with having trouble getting medical attention. Dr. Loeffler, from Mass General, who performed the radiation, retired a few years ago (and sadly died recently), and I'm now "seen" by someone else there. As I mentioned, neither this new doctor nor anyone else from the office has returned my calls for the past few weeks, even though I've spoken with receptionists who said they'll relay the message. I live about 100 miles from Boston and am trying to get an appt. with a local neurologist. I"ll also try a general number for Mass General and Mass Eye and Ear and see about getting a new doctor.

donjehle:
Hi Rebecca,

I am not a physician and cannot give medical advice and I do not have any experience with hemifacial spasms, but it does seem strange if it is related to the radiation after such a long time.  I do not know about that, but the one thing I DO know is that if your new doctor not anyone else from the office has returned your calls, you need to find a new doctor who would be more responsive to your needs.  I would not have any confidence in a physician who did not care enough to speak with you.

Keep us posted on how it goes.
Don

rebeccagreenberg:
Thank you for this encouragement. I've been reluctant, but you're absolutely right: I do need to find a new doctor

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