Hemifacial spasms 6 months post GK

[Trish]

Hi guys - I'm posting here on the US forum (I'm UK based) as you have a wider audience than my home country. Hope someone has some experiences to share with me. I had gamma knife for a 1.8 x 0.8 AN in January 2009 with no ill efects. Then in July I had my first hemifacial spasm (twitching and my face being pulled hard from the eye, nose and mouth) all on the AN side. I didn't get a repeat for a few days, but since then these have increased, until I'm typically getting between 20 and 40 attacks a day.

As you will all understand, this is tiring and embarrassing. My consultant thinks this is a reaction to the radiation, which will pass. I am due an MRI to check nothing too sinister is happening, but I'd appreciate anyone else's experience. This seems a rare reaction, and you know how lonely that can feel!

Hope to hear from someone. Thanks. Trish (Hampshire, England)

[Jim Scott]

Hello and welcome, Trish ~ 

I'm sorry to learn that you're having these hemifacial spasms and I hope some of our members can offer you some useful information.  Because post-radiation swelling is natural, that may be the cause of the facial twitching.  As I understand it, the radiated (and dying) AN swells and presses on the facial nerve, triggering the twitching.  However, I'm not a doctor and, although I underwent FSR, I haven't experienced this particular problem, but some of our members may have and will be more than willing to share their experience - and what possible solutions may be available.

Thanks for joining us Trish and I trust that we can be of some help to you.

Jim

[Goldie]

Hello, Trish, and welcome.  You've come to the right place and I hope we can help!

I had a problem with facial spasms following gamma knife also and it resolved after a 10-day course of steroids...has your doctor tried that?  I didn't have them as frequently as you, but I think it's certainly worth a try.  I don't recall exactly when mine started, but I'm thinking it was about six months after treatment also.   I suspect your nerve is irritated from the GK as mine was.  It is very unusual, but it does happen.  (I later had a recurrence of the facial spasms, but that was related to growth and it's really likely too soon for that to be the case for you.)

I totally understand the embarrassment you feel...nothing like making a quick exit from a room!  People really don't understand and often think it's stress-related.  I hope that your friends are understanding.  You will certainly find support and understanding on this forum.

Denise

[Trish]

Hi Jim and Goldie - thanks so much for your positive replies. It's really helpful to know there are others out there. Goldie, you've confirmed my initial findings that this is a fairly rare reaction to the GK, which makes me feel a bit better about the information (or lack of it) that I've received so far. It also confirms why I've had no response on the UK forum, because of course our population is much smaller than US.

In fact, I had an MRI scan on Friday just gone (I got a call in the morning to come in for a slot due to a cancellation), so hot-footed it over to the hospital. So I should get confirmation of what is happening to the tumour. Goldie, what steriods were you prescribed, and can you tell me whether you had any side-effects? How are you doing now?

Thanks again so much for your support. All the best.
Trish

[Goldie]

Trish, I'm not 100% sure, but I think it may have been dexamethasone that they treated it with.  I know my neurosurgeon was surprised that I had the spasms, telling me that they can see this after surgery but not GK, so I think it is pretty rare - even within our rare disease.  The steroid did take care of the problem (which he called irritation of the facial nerve from the GK) right away and it didn't return until I had further growth of the tumor this year.  At that time the tumor was pressing on my facial nerve, causing the spasms to return.  That does NOT mean that will happen to you.  Hopefully the GK has worked for you and you'll have a good MRI report.  I didn't have any problems with side effects from the steroid, mostly because it's just a short course and not long-term. 

I did have the tumor removed surgically on October 1 and had a great result.  Even with all the problems with my facial nerve, they were able to save it and I have very little facial weakness.  I am very, very fortunate!

I hope you'll continue to keep in touch and let us know your results.  Hang in there!

Denise

[Anomar11]

Hi Trish,

I had Cyberknife 11/08 at Stanford.  Started having hemifacial spasms exactly 6 months out.  I continue to have them, usually once a day, but sometimes more 4-5 maybe.  They last about 10 seconds.  I think they may be getting better.  I go for my annual MRI soon and will write more at that time as I haven't been on the board for a while.  Dr. Chang said it should pass in time.  If you search for facial spasms you will find a few on these boards, but I do think overall it's not as common as some other side effects.  When I had my initial MRI which found the AN, the radiolgist stated the facial nerve was inflamed and a facial neuroma should be investigated, but any other MD didn't think this was an issue.  Likely just the AN aggrevating the facial nerve.  I also had some episodes of vertigo, and will take the facial spasms anyday.  I was on a 12 day course of decadron, high doses back in March for vertigo.  I personally wouldn't take them for something that didn't hurt or interfere with my daily life, as they were harsh on me.  That is a personal decision, though depending on how much these spasms bother you.  I work in a health care environment, and while it can be somewhat embarassing, I just cover my face for a few minutes and say my facial nerve is a little angry.  Most there know about my AN.  Please PM me if I can be of further help.  Hold the faith, that they will pass.  Take care.   Mona

[Trish]

Hey Denise, sorry to hear you had to have surgery in the end - you must have been very disappointed initially. However, looks like you've had a great result. I'm so pleased for you. How are you feeling nowadays?

Trish

[Goldie]

I'm doing great!  I know just how fortunate I am.  Looking forward to hearing your MRI results!

Denise

[Goldie]

Hi, Trish.  Have been thinking about you and just wondered if things are any better with your spasms.  Any news from your MRI?

Denise

[Trish]

Hi Denise - thanks for asking! I've only just heard back from my consultant today and have some good news. My scan (10 months post GK) shows almost no increase in size, but does show a dark colour in the centre, and is consistent with what he would expect at this time. He is hopeful that it has begun the process of degeneration. So that's all good!

So far as the facial spasms go, unfortunately these are no better. I'm still getting them on average above 20 times per day. My consultant thinks that these are due to the effect of the radiation, as the scan shows no evidence of any pressure from the tumour. It is still his hope (and opinion) that these will plateau and then gradually over the next several months decline. It seems a long wait, but I'm going to take all the positives out of this, and will sit it out. I don'tr have a lot of choice as he doesn't think steroids would prove effective in my case. Of course I'm also aware that, while embarrassing, I'm fortunate not to have painful or permanent problem, just sporadic.

I hope you are well yourself, and looking forward to the holidays. Are you planning anything nice?

All the best
Trish

[Trish]

Just went back online after a couple of years and thought I'd post an update for anyone out there who is being plagued with hemifacial spasms after gamma knife treatment. My hemifacial spasms peaked at around 50 a day two years ago, having started about 4 months after treatment. They continued for about a year. However, I'm happy to let you know that I haven't now had one for about 18 months - fantastic! So if you are having these symptoms following gamma or cyber knife, take heart! I didn't think they would ever go and they have. All the best. Trish

[Jim Scott]

Hi, Trish ~

Thanks for the very encouraging update on your former 'twitching issue'.  I'm sure it'll help folks in a similar situation realize that it isn't necessary permanent, which is definitely a confidence-builder.

Jim

[Goldie]

Hi, Trish.  I haven't been on the forum much lately, which I guess is a sign for me too that things are well.  I have thought of you from time to time and am SO glad to hear that your spasms eventually resolved - hopefully never to return!  I have my MRI and recheck next month and don't expect any nasty surprises.  Take care!

Denise