Author Topic: Weird Nose twitching  (Read 8822 times)

texsooner

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Weird Nose twitching
« on: May 07, 2009, 07:57:08 pm »
Hi folks....I hesitated posting this as it seems so trivial, but figured somebody (in addition to me) could learn something.

I'm almost at the 9 month mark post retrosig surgery that removed all but a small sheath of a 3.5 cm AN. I was rated a #3 on the facial scale for a few weeks post op and improved to #2 the on my last doc visit back in January.

Occasionally over the last few months I would get some intermittent twitching on the AN side of my face(from lower cheek up to my eyebrow). I chalked this up to the nerves regenerating fully. Lately however, the twitching has become concentrated and really enchanced on the AN side of my nose. It's been doing this every day for a couple of weeks now. Sometimes when it gets started, it will continue for several minutes and will happen a lot during the day. I even had my wife look and she could see it moving. It doesn't hurt, it's just annoying. Sometimes, I feel like a male version of the woman on the Bewitched show that I used to watch when I was a kid....only difference is I can't make people disappear when my nose twitches. (Many youngsters here probably have no idea what I'm referring to).

I know this is not serious compared to what a lot of us have been thru on this journey, this is just something I haven't seen anyone talking about here. Just wondering if anyone has or had a similar experience with uncontrollable twitching like this as a result of surgery or radiation. As I've been typing this, it's been twitching several times.

I'm hoping this will eventually stop, but if it doesn't, I'll just consider this an additional thing of my "new normal". Can anyone relate?

Patrick
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

MAlegant

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Re: Weird Nose twitching
« Reply #1 on: May 10, 2009, 05:47:59 am »
Yes, twitching!  It happens (almost daily) under my eye on my tumor side.  It is annoying but not controllable (by me at least!).  I am also at 9 months (a bit over) and it has been twitching in earnest lately.  It seems to happen when I'm tired, but not always.  I have decided it's recovery-related and will eventually stop.  If not, I have a cool new trick.  Will ask the doctor at my follow-up on May 19.  (And I remember Bewitched!)
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

stevek

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Re: Weird Nose twitching
« Reply #2 on: May 10, 2009, 06:59:29 am »
I have it as well.  I am 11 months out of Translab and remember it starting sometime late 2008.  Mine occurs on both sides of the nose just above the nostrils.  I just deal with it.  Nothing really shocks me anymore. 

Stevek 
Diagnosed 5/14/08   4cmx2.8cmx3.1cm
16 hr. Translab 6/9/08
Spinal Fluid Leak 6/12, under control & released 6/16
Dr. Hillman, Dr.Chen, & Dr. Aziz @ Allegheny General in Pitt.
2cm regrowth treated with Stereotactic Radiosurgery & released 6/8/11
Dr. Fuhrer, Dr. Chen, & Dr. Hillman @ AGH

yardtick

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Re: Weird Nose twitching
« Reply #3 on: May 10, 2009, 09:19:19 pm »
I still twitch after 2 years and 8 months.  When I have a headache it drives me crazy.  If I'm having facial pain it feels like a thick rubber band is being pulled.  Fatigue will also bring it on.  For me my facial neuroma is the gift that keeps on giving!

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

kenneth_k

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Re: Weird Nose twitching
« Reply #4 on: May 11, 2009, 06:32:10 am »
Hi Patrick.

I also have the twitching thing. It feels funny, but can also be a bit frustrating around other people. I try to ignore it and hope they don't see it. My doctor also told me that it is part of the healing process. In that case, I'm healing every day ;)

Regards, Kenneth

Migoi

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Re: Weird Nose twitching
« Reply #5 on: May 12, 2009, 09:51:23 am »
My neurosurgeon warned me in the pre-op discussions that facial twitches were very common post-op and may or may not be permanant. He also warned of "cross-wiring" , meaning that sometimes a twitch will develop on the other side, or a facial movement intended for one side of your face will actually be executed by the other side.

I'm one day shy of a full year post op and I have an occasionaly AN-side eye twitchiness... and I'm sticking to that story so that if I wink at someone and their response is less than positive I have a handy explanation (so sorry...it's a medical thing, can't help it).

I too remember Bewitched and loved it (the TV series, not the 2005 nonsense). I'm thinking at the symposium we should get groups of women nose twitcher/men eye winkers and men nose twitcher/women eye winkers together.. bet we couldn't go 2 minutes together without a mutual giggle fest.... if you can't have some fun with a serious medical condition, what's the use of having it (I read this same sentiment in another form on this forum, credit to that person, but can't remember who it was)

Of all the post-AN "features", I'll gladly take the eye twitch... it doesn't hurt and you can have some fun with it.

..take care.. tim b
Arkansas Support Group Leader
The wild places are where we began. When they are gone, so are we. - D.B.
AN's only affect the smartest, most interesting people in a population.
On a hill in Onda, AR
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Pooter

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Re: Weird Nose twitching
« Reply #6 on: May 12, 2009, 10:34:31 am »
I'm a twitcher, too.  What I've noticed is that it happens before more movement is regained.  It will happen for several weeks, I get more movement back, then I get a break.  Then, the cycle starts all over again.  Currently, I'm on the downside of a nose twitch on the tumor side.  Which means, I should get more movement back after it's done twitching.

I see it as a good thing; more annoying than anything.

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Cheryl R

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Re: Weird Nose twitching
« Reply #7 on: May 12, 2009, 10:52:16 am »
I have a  friend who had some surgery I think to raise her eye lids some and was maybe 2 yrs ago.  She gets twitches below her eyes occ and recently asked me if she should see a dr about it and what kind.      Told her I wasn't sure which kind but doubt they would do anything about it since isn't a constant happening.              Actually I told her the really specialized type talked about on here but doubt none are real close and she would probably be told live with it.             Never asked her who did it and why not ask them.
I have twitches on my side of the last surgery and which had no facial paralysis.    Only rarely on my side with the 3 surgeries.   
                                                                    Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

texsooner

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Re: Weird Nose twitching
« Reply #8 on: May 12, 2009, 11:25:40 am »
Thanks Marci, Steve, Anne Marie, Kenneth, Tim, Cheryl, and Brian for responding. I don't feel so weird now.

Brian, I will also consider this a good thing. Thanks.

BTW Tim, I agree 100% with your signature. "AN's only affect the smartest, most interesting people in a population"

Patrick
« Last Edit: May 12, 2009, 11:27:40 am by texsooner »
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

mimoore

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Re: Weird Nose twitching
« Reply #9 on: May 13, 2009, 04:24:55 pm »
That is soo interesting. I am sure it is a positive thing.
Check this out when I try to flare my nostril on my AN side my eyelid goes back and forth horizontally. Yep rewired wrong - neat trick though. Nostril still does not move - among a few other things. I love the tingles and twitches for me it means something is going on.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

MAlegant

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Re: Weird Nose twitching
« Reply #10 on: May 13, 2009, 06:48:05 pm »
Like Michelle, I prefer to think it's my nerves hard at work (I am, shouldn't they be?) and that it means that sensation is returning to parts of my face.  I know I'm not a doctor, but I'd rather be happy than right.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

CROOKEDSMILE

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Re: Weird Nose twitching
« Reply #11 on: May 13, 2009, 10:45:19 pm »
I had hemifacial spasms for 5 years so my cheek twitched, my eye twitched, my cheek and neck twitched, nose twitched. THis went on daily nonstop for 5 years. Got Botox every 3 months and lived on Clonazepam to help reduce the severity of the spasms. Hence why I finally had the retrosigmoid surgery to treat the spasms.(bad tradeoff as the paralysis is much worse to deal with than the twitches in my opinion) Got facial paralysis instead of relief from the spasms and now have spasms again resulting from the facial nerve damage from the surgery. Sara on this forum had very similar story. Isn't life exciting! Clonazepam with is often given for seizures is also given for facial spasms to reduce the firing between nerve synapses and lessen the severity of the spasms. It does make you a little tired but you learn to adapt. Might be something you want to check out.
Angie