Post-Treatment > Facial Issues

Hemifacial spasm 6 years post-surgery

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Kim Zingale:
Hi! I had retrosigmoid surgery in 2009 for a ~2cm left AN with no real facial issues post-surgery, just a bit of weakness that subsided after about a month (I did lose the hearing on the AN side though). Now I am six years post-op, and I have been getting hemifacial spasms on the AN side that go from the forehead to the eye to the cheek and down the neck. An MRI showed no change from the last one in 2014; there is an area that lights up but my surgeons think it's scar tissue. These spasms have been happening at different intervals, sometimes as often as everyday, sometimes once a week, since February. I feel like they must be related to my AN surgery but I don't know why this would be happening so far out from surgery with no problems between then and now. Have you heard of this before? The surgeons have suggested Botox or some of the anti-seizure meds, but I'm not sure what I want to do. Do you have any advice for dealing with these spasms? Thanks!

CHD63:
Hi zinger1905 .....

So sorry you have developed hemifacial spasms.

Mayfield Clinic (in Cincinnati) has an excellent description of causes and possible treatments for hemifacial spasms on their website ..... see:  http://www.mayfieldclinic.com/PE-HFS.htm#.VTTJ561VhBc  You may have already looked at it.

Many years ago I developed trigeminal neuralgia (on the side opposite my AN and long before my AN was diagnosed).  Trigeminal neuralgia is similar to hemifacial spasms because it is most often caused from blood vessels compressing the nerve at the brainstem.  Trigeminal neuralgia is most often the result of pressure from a blood vessel on the 5th cranial nerve.  Hemifacial spasms are the result of pressure on the 7th cranial nerve (facial nerve).  Acoustic neuromas grow on the 8th cranial nerve (auditory nerve).  However, both the 7th and 8th nerves run through the internal auditory canal from the brainstem to the face/ear.  All of the cranial nerves are very close together at the brainstem.

I am not a medically trained professional, but it makes sense to me that your spasms might be related to the after-effects of your AN treatment.

Many thoughts and prayers for the best decision for treatment for you .....

Clarice

tu:
Hi,

I am going thru the same thing. I am about 5 years post radiation. For the last couple of months I've been having facial spasm on the tumor side. The spasm would come and go at least once a day, usually when brushing my teeth, chewing, and sometimes talking. The spasm happens at the neck area, the tumor side of the face, it's so uncomfortable when it happens. Will be having an MRI earlier than scheduled. Thanx for sharing. Good luck.

phantagrae:
I just tried to reply to the "Twitching" post in this area, but I somehow ended up dumping my post.

I started having facial spasms this past May.  I am 2 years post-radiation treatment.
My neurologist also mentioned botox, anti-seizure meds or surgery (to put a buffer between the nerve and any blood vessels that might be putting pressure on it.)

The botox treatment would usually be for someone whose face is in a constant spasm, but mine, like you all have mentioned, occurs only occasionally.
The anti-seizure meds would seem to be a lot of drugs for something that isn't as life-threatening as a real seizure in the brain, though I mentioned the spasm and drugs to my hematologist, in a general, "how are you doing?" conversation and he seemed to think that a low level in the bloodstream would work.
My sister, whose son had a seizure disorder (that ultimately required brain surgery) didn't like the idea of me taking seizure meds for something like this because, as my neurologist said, all these drugs have side-effects that can be difficult.

He said that typically with radiation, the facial nerve could get kind of tightened--he likened it to a garden hose that gets kinked up--and that any blood vessels nearby could then sometimes put pressure on the nerve.
For me, they happen when I do something that causes a little exertion, or pressue, like bending over to do something, especially if it's something frustrating or difficult.  I was once working with this cardboard box, trying to fold the flaps inside.  It was a very thick cardboard, so it wouldn't move the way I wanted it to, so I was wrestling with it a little, causing my face to go into spasm.  Also, if I get up from my chair and move too quickly, then once I stop moving, I might get a spams.

I often see twitching around my eye, or around my mouth.  I've even had random twitches in my cheek while I'm sitting at my desk at work.
When my cramp happens, it's the whole AN side of my face--my mouth draws up in a hard grimae, my nostril is pulled up, my eye clamps shut, and I also have a tightness or pulling in my neck, which can be painful in the back, at the base of my skull.

I was given a prescription for neurontin, but I have chosen not to fill it for now.  Though the spasms can be inconvenient or a pain, they're not life threatening and now that I have some answers as to what is occuring, I think I can just deal with it, like I've learned to deal with everything else, like losing much of my hearing (due to the radiation, my ENT believes) and all that lovely stuff.
I did have an EEG and some blood work to rule out any other issues, and my tumor is dead, according to my radiation doc at my last MRI (I go back next February, as I have gradutated from 6-month check-ups to annual), so there doesn't seem to be anything else at work here.

Kim Zingale:
Hi! I have an update for you guys who have been experiencing the same thing. My neurotologist said that he'd read about latent herpes virus around the brain being affected by the AN/treatment. I agreed to take a 60-day treatment of the anti-viral medicine  famciclovir to see if it stopped or reduced the spasms. Within two weeks of taking the medicine, the spasms stopped, and now it's been about a month since my 60-day course ended, and I haven't had any spasm recurrence yet. I cannot be sure that it was a direct cause and effect with the medicine and the spasms ending, but it could be worth trying.

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