annoying twitch / spasm in neck

hello, I had a Vestibular Schwannoma removed on 10/29/09.  CSF leak repaired on 12/29/09.      Last MRI was in June 2010 - and the doc said no regrowth of the tumor at that time, but still had swelling and a few issues like artery / vein narrowing.  

All healed now, but suffer from headaches. Daily. Never ending.  

But, for the last month or so, I have something new.  A twitch in my neck, opposite side of my surgery.  Runs from back left area of my nape of the neck down to mid shoulder.   Happens several times a day, even at night - wakes me up.   Does not hurt. Does not pull.   Just pulsates over and over and over rapidly --- then stops.  Goes on for a minute - sometimes two minutes.   Then nothing for an hour - then starts again.  Sometimes a few hours goes by.  Seems like it is more frequent lately and lasting longer each time.  My head has started a slight shake.  Not every time the spasm/twitch starts, but it is there sometimes.  Then I am fine in between the episodes.

Any ideas? I don't want to sound like I'm nuts when describing this to the doctor.  

I see my neurologist on 3/2/11.

Thanks for any help!

Carol

[Dr Sharma]

Hi there. Patients following vestibular schwannoma surgery have been seen to show near equivalent quality of life like the healthy population. Advances in surgical techniques have minimized morbidities associated with vestibular schannoma surgery. Limitations may range from facial nerve dysfunction, vestibular dysfunction, tinnitus or hearing loss are possible deficits and preoperative counseling, follow up and rehabilitation would help. Consult your surgeon for best advice. the issues of headaches, muscle twitches and spasms need to be investigated for demyelinating lesions like multiple sclerosis. a clinical evaluation along with csf examination, MRI brain and evoked potentials could help.Take care.

[Carol139]

Hi Dr Sharma, I do have demyelinating issues from the June 2010 MRI.    They were not too concerned because I had surgery to the area and passed it off as being expected with my headache issues.  So, I forgot about it since my next MRI wasn't going to be until June 2011.

You are right, I have lost the hearing in my right ear.  Tinnitus is constant.  Right eye peripheral blindness (happened before the surgery, has not progressed since).  Face still twitches now and then - especially the lip area on the right.  And I never got the full feeling back in my right side of my face.   And yes, I am still dizzy here and there, and if I am not walking carefully, and turn too fast, will still take a spill.   Oh, and crocodile tears.   Probably other things I am not thinking of at the moment.  :)

I did have a CSF leak after the surgery which led to a 2nd surgery to repair.  Ended up with an infection, but no meningitis.

Thank you for the help, I will mention the new twitching to my doctor, and ask for a follow up MRI.    Sometimes we feel like we are being big babies and then we don't speak up.  That's why I didn't "run" to the doctor with the various symptoms I was having --- which turned out to be a brain tumor.  

Is there any test in particular to rule out or confirm MS ?

thank you again,

Carol