Facial contortions post GK

[robinb]

Got pretty freaked out yesterday as I had a very brief episode of facial twinging/spasms. It felt like all the muscles on my AN side were contracting and distorting my face and I couldn't control it. I was actually trying to pull the corner of my mouth back to where it felt like it should be. By the time I got to a mirror everything was back to normal. After looking at posts, seems like this is not abnormal.

In the last week, I have also had increased dizziness; mostly when I am stressed or increased heart rate when working out.

From what I can read here, nothing abnormal right? Will probably call Dr. Lunsford tomorrow anyway, but any feedback appreciated.

Had it happen again this morning while brushing teeth; this time I could see it. Looks just like I described. Mouth pulling up, eye socket shrinking. Lasted 30 secs, felt a lot longer.

Have call in to Dr. Lunsford's office; he is currently away.

[maxine]

Hi,

 I had gamma knife five months ago and have developed hemifacial spasms also.   I had twitches beneath my eye and tingling in my lips for about six months before the GK. The lip tingling disappeared for a while after the GK, but about two months ago I started getting more obvious twitching under my eye, and then full-fledged hemifacial spasms, that caused my eye on the AN side to totally close and my mouth to draw up.  It lasts for about a minute and is very disconcerting. I worry they will happen while I am driving.

  For about a week or two they were coming more frequently from every couple of days to every day and then several times a day.  I have found that they are worse if I am fatigued or upset or even if I make certain facial expressions. I haven't had them in a few days and I am hoping they will go away, sooner rather than later.  My doctor said it would probably go away after about a year and that  I could take medications to control the spasms or else botox injections, but I am not interested in either unless it gets worse.

A number of people on the forum also seem to have had facial spasms.  At first I was pretty unhappy about it. I figured, I have dealt as well as I can with the SSD, and I am working hard on vestibular therapy for disequilibrium issues, and I have headaches and intermittent ear pain and tinnitus that I do my best to either ignore or amuse myself by listening to the strange noises, and now I have  facial spasms too!  (Although I don't usually have all of the symptoms at the same time.) I am not sure if I would have developed them from the AN anyhow, or if it is a response to the radiation and/or possible swelling of the tumor.  I have my six-month MRI coming up in about three weeks so perhaps that will reveal something.

So, your episode seems pretty similar to what I have experienced, and also to experiences other people have shared on the forum. I  think some people have chosen to take the medications, with varying results. It's good you have called your doctor; please report back on what he says. My guess is it's just another variation on the overall AN experience that some people get and some don't. Good luck; I hope  they go away soon.

[robinb]

Thanks Maxine-

After I posted I found the whole thread on hemifacial spasms; didn't come up for me at first. I remember seeing it before but in my momentary panic, couldn't find it.

I guess things were too good to be true for me doing so well w/no side effects. Hopefully this will pass quickly.

Dr. Lunsfords associate prescribed another round of Methylprednisolone; I took it right after the GK; I see Gabapentin mentioned a lot in other posts.

[mayfly]

I haven't been on for a long time. I can offer some info here. I had GK done by Dr, Lunsford in May of 2010. Strong hemi-facial spasm developed in December 2010 along with other symptoms. Methylprednisone was prescribed because MRI at that time showed continuing tumor expansion (which has gone back down). Gabapentin didn't work - neither did Neurontin. I was finally prescribed Clonazepam which helps. I still have spasms, but they are infrequent and much milder. Where the entire half of my face and neck used to contort, now I only have small twitches near my eye and mouth and neck. Dr. Lunsford thinks this will eventually all disappear. There is slight drooping and numbness that has not improved. My tongue is numb on the left side. The neurologist I see here thinks the nerves were possibly damaged by radiation. Who knows?

[robinb]

Thanks so much for the feedback.

Started prescription today, haven't had an episode since yesterday. So will take it one day at a time.

This just totally caught me by surprise. Will continue to post updates on my GK experience thread.

[maxine]

thanks mayfly and robinb for your input.  I'm glad to hear your doctor, like mine, thinks the spasms will disappear eventually.  Just curious, do either of you have puffiness in your eye area above your eyelids?  My eye area seems swollen and droopy, but I'm not sure if it's related or not. I also have occasional tearing only in the eye on the AN side.

[robinb]

Hi Maxine-

No puffiness that I can see or tearing.

Thanks!

[chloes mema]

Just came back from seeing my neurotologist this morning.  He said he doubts my spasms will ever stop but I have faith that they will.  He also suggested I get Botox around my left eye since he saw me have a spasm which closes the eye, makes it water etc.  I really do NOT want Botox so we discussed it a little.  My spasms are so strong at times that I can feel them down my neck out to my shoulder.    

I've noticed that some mornings I wake up with what looks like dark bruises around my eye especially in the corner and in the creases.  I know I have strong spasms at night because they wake me up.  Also, above my eye does look puffy and like the lid is starting to droop.  I asked the doctor if I have Botox will I be able to close my eye.  He said well, not completely.  That did it for me.

I've tried steroids and Gabapentin, neither did anything for me.  What I've found on my own is Valium works and therapeutic massage.  Each of us is different so I believe we need to find what works for us individually.

Good luck to all that have hemi-facial spasms.

Like my PCP said, "It's not life threatening, just embarrassing!"  It is very embarrassing but after six months of spasms I pretty much just go with the flow now.

Karen