Author Topic: Hemifacial spasm 6 years post-surgery  (Read 6129 times)

zinger1905

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Hemifacial spasm 6 years post-surgery
« on: April 19, 2015, 08:49:07 pm »
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!
Retrosigmoid surgery Feb. 9, 2009 at Johns Hopkins with Drs. Tamargo and Carey.
http://adventureswithmanny.blogspot.com

CHD63

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Re: Hemifacial spasm 6 years post-surgery
« Reply #1 on: April 20, 2015, 03:59:27 am »
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
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

tu

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Re: Hemifacial spasm 6 years post-surgery
« Reply #2 on: May 21, 2015, 11:42:49 am »
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

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Re: Hemifacial spasm 6 years post-surgery
« Reply #3 on: July 31, 2015, 11:21:09 am »
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.

Numbness on right side of face beginning some time in 2012 through early 2013
MRI 4/15/13
20mm x 19mm x 16mm intra and extra canalicular AN on Right Side.  ("Largely extracanalicular")
FSR treatment beginning on July 22, 2013--going for 30 treatments

zinger1905

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Re: Hemifacial spasm 6 years post-surgery
« Reply #4 on: September 01, 2015, 07:48:09 am »
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.
Retrosigmoid surgery Feb. 9, 2009 at Johns Hopkins with Drs. Tamargo and Carey.
http://adventureswithmanny.blogspot.com

mauribo2

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Re: Hemifacial spasm 6 years post-surgery
« Reply #5 on: December 20, 2016, 09:51:59 pm »
The antiviral treatment is quite interesting. I found an article about it but it's still considered just a hypothesis.
What doses did you take?

Mauro

doody73

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Re: Hemifacial spasm 6 years post-surgery
« Reply #6 on: February 09, 2017, 03:40:40 pm »
I'm really curious about using anti-viral medicines to treat this.

My spasms suddenly became more frequent. They used to occur just as I got out of the shower, but then they started happening at other times too.

My doctor wants to use Botox, but I'm going to discuss the anti-viral approach with her first. Any recommended reading on this subject that I can share with her?

jonathan777

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Re: Hemifacial spasm 6 years post-surgery
« Reply #7 on: May 08, 2017, 08:32:35 am »
I was just wondering about this. I had my surgery in 2011 and just started experiencing facial twitching on the AN side. I did also have sinus surgery in the summer so I wasn't sure if it's related to that as well. It's driving me nuts! It just started today.

david44870

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Re: Hemifacial spasm 6 years post-surgery
« Reply #8 on: July 18, 2017, 06:00:49 pm »
I have tried posting and replying in the past, however, never got a response and don't know if anyone ever read it. So, here goes again  :) I had the gamma knife treatment in 2013 at the Cleveland Clinic. The treatment was successful in stopping the growth of my acoustic neuroma. Approx a year later I had my first hemifacial spasm. My left eye was pulled shut the right side of my mouth was pulled up. My wife took one look at me and said " you are having a stroke". I got to a mirror and immediately agreed. She called 911 and was taken to ER. I found that I did not have a stroke. PTL! That first episode began when I was laughing at something she said. Another time I was bent down eating juicy peach trying keep the juice from dripping on clothes. There were other times when doing other things that caused my face to go into stroke mode. My internist who is also my primary sent me to neurologist who prescribed clonazepam. Love that guy! After a few visits and adjustments to the dosage, I have few spasms and when I do they rarely noticeable. Perhaps the poorly written commentary will help someone out there. PS I love my clonazepam  :)
First diagnosed with hydrocephalus 4/19/2013. Surgery to insert shunt 4/22/2013 At Firelands hospital in Sandusky, Oh. Then diagnosed with a 2.1x2.4x1.9 AN. Gamma knife surgery and the Cleveland Clinic 6/3/2013. Routine MRI's since reveal no growth and a slight shrinkage.

WhiskyJoe

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Re: Hemifacial spasm 6 years post-surgery
« Reply #9 on: July 19, 2017, 06:02:58 am »
I have a small tumor in the internal auditory canal.  I've had two MRI's since I was diagnosed in September 2016, neither of which showed any growth.  Although the MRI's show the tumor to be stable, my symptoms, including balance problems and hemifacial spasms, are getting worse.   I used to have the spasms only about once a month.  I now have them almost every day, but usually only when I'm taking a shower or lifting weights.  (It also happened once while I was bent over eating a nectarine.)  The surgeons I've spoken with think I may have a facial nerve neuroma.  Although my symptoms are getting worse, I don't have any numbness or facial weakness, so I'm standing by for the time being and not undergoing any treatment.
- 8 x 4 x 5 mm AN diagnosed on right side September 2016
- tinnitus, moderate single-sided hearing loss, equilibrium problems, semi-facial spasms
- monitoring with serial MRI's and audiograms

doody73

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Re: Hemifacial spasm 6 years post-surgery
« Reply #10 on: July 20, 2017, 04:08:40 pm »
After having another MRI and consulting with a new ENT doctor about Botox and anti-virals, I saw my chiropractor for a back problem. I mentioned the facial spasms and he checked my jaw. A couple of light taps later, my muscles relaxed and spasms and twitching stopped. My ENT's response when I told her? "Keep seeing your chiropractor." From what my chiropractor said, because of the facial muscles not being "quite right", my jaw was out of alignment which in turn made my muscles spasm more.

It's worth a try!

Luxuriousbeauty

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Re: Hemifacial spasm 6 years post-surgery
« Reply #11 on: April 01, 2018, 11:41:53 am »
Hello,
It's been 3 months sinceI had radiation for AN on my right side.  I am starting to get eye and upper lip twitches.  At first I thought that it was psychological, I could not see anything, but it has become more often & stronger.  This morning I looked in the mirror and I could really tell.   Started reading before running to Urgent Care. Your postings have been very helpful, I will wait to call the Radiologist office tomorrow & get a referral for a Neurologist.   The antiviral tip sounds great.  I read that vitamin D & blueberries are very helpful.   Thank you all. 

 


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