Hemifacial spasms starting 9 years post radiation

[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

[mwatto]

I do not have this. However in my case I get stabbing nerve pain and neck exercises have helped so much! I did post a link to ones I do - I feel that the neck may be involved - had neck stiffness post vax and covid and the ear pain is trigeminal - I feel our nerves are irritated. Maybe worth a try Magnesium and full spectrum CBD helps me. I read this today re compression of facial nerve: https://www.aaroncohen-gadol.com/en/patients/hemifacial-spasm/treatment/radiation-therapy

[rebeccagreenberg]

Sorry to hear about your pain, and glad that the neck exercises help. Thankfully, I'm not experiencing any pain with my spasms or swelling.

I met with a new-to-me neurologist yesterday, and he did some tests in his office (e.g., watched me walk, stand with my eyes closed, close my eyes, etc.). He said that I have facial weakness on my right (AN) side and that the facial nerve had probably been damaged by the surgery and/or radiation, and as I’ve aged the nerves have gotten weaker. Unfortunately, he couldn’t explain the swelling under and over my eyes; I'm hoping a facial CT scan I have scheduled for next week will help diagnose that.

[donjehle]

Please let us know what you find out, Rebecca!

[rebeccagreenberg]

The CT scan didn't show anything that would cause the swelling. In a way I'm a little disappointed, but I'm also relieved. I think the neurologist's explanation of facial nerve damage caused by the surgery and the radiation, and then exacerbated by aging, makes sense. While I'm not happy living with the twitches, spasms, and swelling, I'm willing to accept this status as my new normal.

Thanks for all your concern and suggestions.

[Dlip246]

Hi Rebecca,

I just saw your post.  Here is a link to my thread.  You can check it out and see what my experience has been.  I am still going through it .

Afterwards, if you would like, we can speak and maybe we can help each other. 

Wishing you the best...!

David

https://www.anausa.org/smf/index.php?topic=25259.msg979783259#msg979783259

[rebeccagreenberg]

Hi David,

First, my apologies for this delayed response; I haven't checked this site for a several months. I read your thread, and I'm sorry you're going through this too. I recently met with an ENT to see about a second opinion from a different perspective, and she concurred about the facial nerve damage, and said the only treatment are meds, which all have side effects that I don't want to deal with.

A friend suggested that I try acupuncture or acupressure, so I was just looking on this site to see if anyone had tried these and didn't see it mentioned. Do you know anything about that?

With all my best wishes,

Rebecca

[mwatto]

Hi Rebecca I just saw an opthal mologist re eye twitching, stabbing eye pain and dimpling under the AN eye in morning- he found nothing. He did say its not uncommon after Covid which I had 9 months ago - plus I had RSV 6 months before that. Full spectrum CBD has calmed it and a bit of magnesium. As I write this I am totally fine. My nerve pains were mainly TMJ related.

[Dlip246]

Hi Rebecca,

I say try anything you can!  I did try acupuncture early on but it didn't work (I am a huge fan of acupuncture from other muscle related issues in the past and it always helped).  But maybe you will have better luck than me.  Recently, I went on a very high dose of steroids again (stronger than the time before) and while I was on them it did help a lot!  but...those side effects! They can really mess with you!  Since the treatment ended I think my spasms have reduced but they have not completely gone away. But it definitely helped.  Maybe that's an option.  A few weeks of misery for maybe some good results?  I also am doing cryotherapy and taking all the vitamins and supplements I can.  Who knows what is working for me.  I recently did an MRI focusing on the facial nerve and have an appointment to have it read next week - maybe that will shed some light on this.  Keep us posted on if you do the acupuncture or if you start a round of steroids or anything else. Wishing you the best! 

David

[mwatto]

David I am about to ask for focus on my facial nerve next MRI in March. Last time I asked for trigeminal nerve focus - nothing of any issue there. Wondered what your MRI revealed re facial nerve? I still get stabbing ear/eye pain 5 years on during the night - unless I take full spectrum CBD.Have been told its most likely TMJ. I am very interested in your mention of cryotherapy as I have cold swims almost daily at the beach and cold showers before bed (heatwave this side) and maybe its the endorphins kicking in but cold does help.

[stevehernes]

Consider reaching out to a different neurologist or a neurosurgical center that specializes in treating conditions like acoustic neuromas (AN) and related complications. They may have more experience with cases like yours and be able to offer additional insights and treatment options.