hemifacial spasm post cyberknife

[BDB]

I let my dogs out the other morning and suddenly the right side of my face contorted,my first thought was a stroke ,but the rest of my body was fine.Scared I took an aspirin and called my cyberknife doc(now three months from first treatments).Saw doc and she had no clue,and referred me to my GP who considered bell's palsy,but wasn't quite sure.So I did the usual and Googled ,it took about one minute and I found the description of what I expierienced,Hemifacial spasm,my MRI showed no change in tumor size ,thats good,but I did mention that I felt that my iniatial symptoms were intensifiying(dizziness,pain behind ear).The cyberknife doc believes this isn't from the CK treatment or the tumor.
Has anyone else expierenced these spasms?
Any comments are welcome .Thanks!Bruce
This spasm makes me look like a weird type of monster!!!Not good when talking to a customer.

[sher]

I am sorry to hear of your spasms... where did you get your CK treatment?
Sher

[sgerrard]

Bruce,

I can understand your frustration, but I think it would be wise to give up the blame game, and focus on finding a doctor who can treat facial spasms. Both the oncologist and neurosurgeon specialize in treating tumors, not treating the various other symptoms that tumors may cause. I just Googled "hemifacial spasm", and there is even a website with a forum for it, which might be worth a look.

I'm not sure if it would be a neurologist or some other specialist, but your GP should be able to help you find someone appropriate. ANs can come with all sorts of baggage, most of it unwanted, and you just have to tackle whatever it dishes up as directly as you can.

Best wishes, and I hope you find a successful treatment for the spasms.

Steve

[BDB]

Steve,I appreciate your candor, I guess I let my emotions take over and directed my frustration in the wrong direction,actually overall the docs have been ok,a few issues though.They certainly didn't cause the tumor or any weird things that go with it.I was just doing great after CK,regaining my energy,living pretty much normal again,then this facial thing...But so what,could be much much worse.Ive'got much to be thankful for and need to remember that! So thanks Steve !it really helped to get an honest view.
Sher,I received my treatment at Appleton Medical Center,I will say they were great,had no issues with the treatment,and the staff was excellent.

[sgerrard]

Hi Bruce,

One of the good things about having this forum is that you can share that kind of frustration here, and blow off some steam. That alone will make you feel better.

I can well imagine the disappointment of going along for several months after treatment without a hitch, then having this crop up. ANs are pesky, no doubt about it. I hope you manage to find a doctor who knows about facial spasms and can come up with a good way to treat it.

Steve

[ppearl214]

Hey Bruce,

I'm on a Moderating hiatus right now and was lurking in... and saw this post. I have to share the same thoughts as Steve and saw your response to his comments.  Ya know, the "voice of reason" is sometimes best heard from other folks... and I'm glad Steve was able to help.   We've come to realize, that in our research of treatment options, regardless of which treatment is chosen (microsurgical, radio, etc), that things will crop up... either short term post treatment or further down the road. I had my CK just over 2 yrs ago.. .and I still have things crop up.  I know of one here that had microsurgery many years ago on their AN and recently, had things crop up that should/would have occurred 2-3 yrs post treatment.  Steve is certainly correct about the "baggage" that can weigh on us... and I'm glad that his voice gave reason... and hoping that you find the answer to this situation with the proper physician that specializes in this issue.

Please hang in there.... we know we have a tough road.... but, I know that the folks here will help guide and support..... allow us to help give you strength to find answers and keep your chin up.

Hang tough...... going back on hiatus now.
Phyl

[fbarbera]

Bruce,

Is your tumor on the same side as the spasms?  If so, I think there is a serious possibility that this is simply related to the dying process that your tumor is undergoing in response to CK treatment. 

In my experience, CK doctors are pretty clueless when it comes to post-treatment symptoms.  I suspect this is because this tumor we have consists of organic matter and is moving around and touching all this sensitive nerve stuff, triggering strange and crazy sensations in our head.  The doctors really have no way of knowing fully what exactly the tumor is touching, with how much pressure, etc. 

I had CK at Stanford in August 2007 for a 2.6 cm right-side AN.  I had some right-side facial numbness before treatment.  Since treatment, I have experienced various sorts of weird sensations on the right side of my face, from a feeling a numbness to the occasional tick to the occasional urge to scrunch up that side of my face to increase sensation.  There's some weird stuff with my right eye too.  For me, months 2 - 8 after treatment were the most intense in terms of post-treatment symptoms.  Dr. Chang and the team at Stanford would tell me, on the several occasions that I called in frustration at how crappy I was feeling, that this is the period where we are most intensely feeling the effects of the radiation.  In fact, I was told that intense symptoms relatively early on after treatment could be a positive sign that the tumor is responding well to the treatment, i.e., it is dying.  In my case, my six month MRI revealed that my tumor had become substantially inflamed from the radiation but also appeared very much on its way to necrosis.  Now, about nine months out, nearly all of my post-treatment symptoms (and they were quite unpleasant at times) have faded.

It sounds like your spasms are much more intense than anything I experienced in my face but I share all this because, let's be honest, we have a tumor in a sensitive part of the body, surrounded by nerves that control movement and sensation in our face, and the tumor is undergoing some intense responses to a blast of radiation.   My experience has been that a lot of these sensations settle down with time after CK.  I sincerely hope the same happens in your case. 

Best,

Francesco



   

 

[Jim Scott]

Bruce:

While I haven't experienced post-op facial spasms I can certainly understand your frustration with them.  I'm glad Steve was able to help you refocus your energies from anger to getting help.  I trust you'll find that help and this issue will be resolved, soon.

These forums serve a variety of functions.  Offering trustworthy patient information is the primary reason but venting to sympathetic readers and occasionally receiving advice from those who have 'been there' and understand the 'AN experience' is another vital function of the message boards.  Many AN patients at every stage of the experience, from initial diagnosis ('newbies') to folks still deciding on a form of treatment to patients seeking a surgical team (or radiation oncologist) and facility or to those of us who are many months past our treatment, be it surgery or radiation or both (Jim raises his hand) we all share what we have to offer in a spirit of cooperation based on empathy and concern for those in that small group of people who are diagnosed with an Acoustic Neuroma every year.

I'm pleased that this forum and a fellow Moderator were able to help you.  I hope you'll return here often with whatever you have to share, including good news, frustrations with whatever you're experiencing and even bad news.  We really do care.

Jim

[BDB]

Thanks everyone for your replies! I spoke with the neursurgeon,and he figures its a side effect on the nerve from radiation,since its been about 3mos.since treatment,said things like this aren't unusual.Put me back on Decadron,to see if this helps,I believe it will.I feel a greater sense of relief,and believe Im'headed in the right direction.
Fbarbera,Yes the spasms are on same side as tumor.
Once again thanks to everyone on this forum,its great to be able to vent,share,and get others input,from others who have had to deal with these dumb things!

Bruce

[elliemae]

Hi, Bruce
I'm generally a lurker here (I'm so shy... ), but the title of the thread caught my attention immediately!  I am a Watch-and-waiter and I have hemifacial spasm on same side as my AN;  I've had it for about 3 years...it began just about the time when my hearing started acting up.  I asked my neurologist (I also have MS) if it was related to the MS, but he said generally no.  I also asked him if my hearing problem was related to the MS, but again no....it took a smarter radiologist to finally discover the AN on my 2nd MRI after my hearing really started going ...

So, I digress!  Is the hemifacial spasm related to the AN?  No one can tell me for sure!  My neurotologist thinks it may be that the AN is near or on the facial nerve as well as the hearing nerve.  But the MRI doesn't show this.  I recently had a consult for CK in trying to decide on treatment, and the neuro-oncologist said the same thing.  Neither promised any improvement after microsurgery OR radiosurgery.

Anyway....my face scrunches and that lasts generally about a minute or so, and is more active when I'm tired or stressed.  I've been told that Botox is a treatment if it really bothers you.  The neuro also told me that Botox could also cause a droopy eye, etc.  So, there are side affects with everything!

I hope your's improves.  Wish you luck!
Elaine

[Patti]

I still get twitches on my AN side even though it has been almost 8 years.  Only twice were these twitches painful and breath catching.  But i have strange sensations all the time and occassional twitching.  My neurologist said that anything can happen to sensations when you damage a nerve.  BTW some nights these sensations are so unpleasant I can't sleep.  Patti

[BDB]

Ellliemay,Glad you posted,these spasms don't seem to common,but sure are strange.With you having MS,does your neuro believe it could be a contributing factor?I also believe stress contributes as I was turkey hunting,called in a turkey and just the time I want to shoot,I get huge spasm!Did your spasms seem to coincide with your AN diagnosis or MS? I believe my neuro doc is right on(keeping fingers crossed) as I haven't had an attack in last day since the decadron has kicked in my balance has also improved again.I know MS can give all sorts of neurological and other symptoms,as good friend of mine has been diagnosed with this.I wish you good luck with this and hope you also can get some relief,I know I read of a surgery that works ,but you would have to be sure thats whats causing the spasms in the first place.

Keep checking in maybe someone else has had these expierences,Good luck! Bruce.

PS.I continue to have unusual sensations in face but no spasms,just a little AN junk I believe.

[elliemae]

Hi, Bruce
My spasms started with eye twitching just about the same time as the tinnitus started.  IMO, with hindsight of course, this appears to connect the spasms to the AN.  Neither my MS neurologist nor the AN neurotologist can say for sure though.  The neurotologist thinks it is connected, but can't see it on the MRIs.  And the neurologist didn't think it related to MS...to me anything nerve-related screams "MS", but dr says "not necessarily"!! I suppose there's another specialist I could (or should) see about the hemifacial spasm...eeeek.  I had also read about the surgery, if they find the real cause of course.  (Botox sounds better...maybe they could use the leftovers for the wrinkles!  )

Anyway, I'm glad to hear your spasms have gotten better.  Hope that continues!  I guess for me, either micro- or radio-surgery will either help or not help the poor face. I am glad to get all this info about peoples' outcomes with both treatments.  It's a help in the decision process (I think!)
Elaine