ANA Discussion Forum
General Category => AN Issues => Topic started by: LMH on June 12, 2008, 07:57:28 pm
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Hello. I just came across the term hemifacial spasm and am wondering if it might pertain to me. I have a right sided 8x6 mm AN (diagnosed almost 2 years ago) and started having some right eye twitching in January. It doesn't twitch much anymore but does go into occasional spasms where for a split second it seems like the eyelid may not open again. I do have a constant strange sensation all around the eye almost like a numbness. Can anyone shed any light on this for me? I've mentioned the symptom to several doctors. Some have said it could be related to the facial nerve. Others says it's probably unrelated. I had not heard the term hemifacial spasm until finding it on this site tonight.
Thanks,
Lisa
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Hi Lisa,
Found this and thought you might be interested. http://www.ninds.nih.gov/disorders/hemifacial_spasm/hemifacial_spasm.htm Sure sounds like it to me!?
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Hi, Lisa:
Because hemifacial spasms can result from pressure on the facial nerve, your AN could very well be the culprit. I would certainly request that your doctor order an MRI scan, asap. I would also seriously consider treatment for your AN before it grows too large and causes even more facial problems that could possibly end up being permanent. Despite some doctor's ambivalence about the reason for the spasms, they should not be ignored.
Jim
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Thank you so much Karen and Jim.
Jim - You mentioned requesting an MRI. Are you suggesting that to see if there's been growth? It's just so odd b/c the twitching happened periodically beginning in January. I had an MRI in March that showed no growth. I don't remember exactly when the sensations/numbness started and the eyelid twitching has happened about 3 or 4 times total over the past few months. Thanks for your input. I really appreciate it!
Lisa
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Just a quick comment, Lisa, that there is more to ANs than size. Even if it is not bigger, it may be latching onto nerves more, or invading them, or hijacking blood vessels, or something like that. Small ANs can still disrupt nerve function quite a bit, while sometimes larger ones don't cause any symptoms. I tend to agree with Jim, if the AN is getting into mischief, getting treatment sooner might be better, even if it is not getting bigger.
Steve
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Hi Lisa:
I had two episodes about two weeks apart. The first time it happened it scared the___ out of me. I was lifting a desk pedestal and my left eye closed and my mouth on that side drew back. It took about 40 seconds to a minute for it to begin to release. The second time it happened I was playing with my dog on our basement stairs, again exerting some pressure in my Cardio vasuclar system. I called my doc and his advise and recommendation was first to not panic, it was likely not related to the AN, but I should "journal" my episodes. I had no further symptoms. This was in late february and early march of this year. I had my 1-year post Radio Surgery MRI last week and spoke with my doc's this week. The AN is dying and shrinking. I brought up the spasms again and they admitted that it is possible that there could have been some facial nerve involvement with the AN, but with it's shrinking it was more likely that it could have been affected by the Radio Surgery itself or the "artery compression". So, journal your episodes, what, when etc. and keep in touch with your Doc's. The 2nd time it happened to me a made it to a mirror before it relaxed. Boy was that an odd sight. Keep smiling.
Dan
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I had Cyberknife done end of Mar.08,In jun.started having spasms,half my face would contort,for about a minute or two.Dr.felt it was from radiation affecting cranial nerve.took decadron for 1mo.as soon as i tapered(last week).the spasms came back with a vengeance5 to 6 times daily.Back on decadron but for a shorter time as i have had a lot of steroids in last year,also just started neurontin,which I already don't like,makes me tired.I am still getting spasms,but have only been on meds for couple days.
My understanding is that this is relatively uncommon following cyberknife,but theres always these odd things that can happen.These spasms are more embarassing,than anything,not painful,but the whole side of the face scrunchs up.Mine did star out with some twitching around my eye,progressed around my mouth,feels like worms under my skin.I hope yours gets better and doesn't progress. Bruce
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I've been having them when very tried or very stressed. My Dr told me because mine is a facial neuroma, it is to be expected. It freaked me out the 1st time, but anything freaky or unusual seems to find me :o
I was so glad when it happened at a staff meeting that I had to attend on money laundering and terrorism. I've been off since April 15, this meeting was 3hrs and very intense, but anyway when the GM started with his spiel my face went nuts. I covered my face and put my head down until it stopped. During the break I reassure him I wasn't winking at him ;)
That night during the meeting my face would spasm about every 20-30 mins. I couldn't wear my glasses because they bothered my scar neuroma. My vision was effected, obviously, from straining. I was so glad my co-works saw first hand what I'm going through. Too bad they can't feel the headaches!
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Hi Yardtick and all. I'll chime in to let you know you are not alone!
I am in watch-&-wait mode for my AN, looking at different treatments. I've had hemifacial spasm just about as long as I've had tinnitus and hearing problems. They both got worse in synch. Last week I saw another radiation specialist about possible treatment, and my diagnosis of "vestibular schwannoma" got changed to "maybe it's a facial schwannoma" due to these spasms and the history. Like you, Yardtick, my spasms mostly happen when I'm tired or stressed. It happens during meetings I attend OR hold, and it happens on the subway going home from work (can't explain the latter, but maybe that subway ride is a stressful situation!). I also find that staring at the computer a long time sometimes sets them off. I usually clap my hand over my face and hope no one is looking, and after a minute or so, it goes away. These sometimes happen quite frequently as your's did during your meeting. And, oddly, I also find that I can sometimes go for days w/o any spasms, even when stressed.
The Dr I saw is sure the spasms are related to the tumor and its probable closeness to the facial nerve, altho the enhanced MRI does not pinpoint this. He recommended fractionated radiation treatment to me over surgery or single-shot radiation as the best treatment to hopefully spare the facial nerve. I don't think the spasms will go away, though. And, I'm not sure what else specifically can be done for the spasms. I was told by my neurologist when this all started 3 years ago, that botox helps. But there are possible reactions to that (droopy face), and in the end, I decided not to do that.
As an aside...Yarktick, attending anti-money laundering meetings can really do it to you! (I think maybe you and I are in a similar line of business! It is the regulators that get to me :))
Best of luck!