Watch and Waiter with new symptoms

[heylo]

January 09 I was diagnosed with a 3mmx4mmx3mm AN impacted in L distal IAC...on inferior portion of vestibular nerve.  Saw ENT in Jan because of tinnitis in L ear and dizzy spells.  Did hearing test and some loss of high frequencies in L ear so did MRI and found AN.  Consulted with Dr. Lambert at Medical University of SC as well as Dr. Fayad at House Ear in LA and both agree that Wait and Watch best option for now.  Yesterday, had abnormal dizziness from my "norm" of on and off epsiodes.  Then last night, started having facial twitching in affected L cheek and L lip corner which I have NEVER had before.....everyone gets the occassional eye twitch with or without and AN, but the cheek/lip thing is kind of freaking me out a bit when paired with the increased dizziness.  It's not numb....it's involuntary twitching.  Other that those symptoms, still have tinnitis (since diagnosis will have about 10-15 second periods where it goes from sounding like it's normal "buzzing" to super high pitched and then returns to normal buzz).  Continue with mild hearing loss that hasn't changed that I know of.  Also have had increase in migraines to the point of 3-4/week where I only use to get them 1-2x/month.   I have developed a cold overnight so ?maybe cause of increase dizziness/ but twitching??  Dr. Fayad told me to call with any changes but being a Nurse Practitioner, I don't want to call about little things.  Is this a real change or no?  Am due for repeat MRI and hearing test in July!!!!!  Appreciate any input!
Lora

[GM]

Since this was the first time...what if you waited to see if there is a pattern before you contacted you Doctor about it? 

I'm not a watch and waiter...but, we all go through wondering if we've developed a symptom, even after we've had our AN treated.  Sorry about the cold, I hope you feel better soon!

GM

[Lilan]

Others can weigh in on this but it seems like there is a "tipping point" for some of us and once symptoms start, they progress and/or others follow quickly.

It's like once there's enough pressure from the tumor to cause one symptom, others aren't far behind. I have a blood vessel tumor known for causing symptoms at a very small size, but I have noticed this with posters on here with this happen as well. SOMETIMES. Others seem to watch and wait more successfully, but for me, once symptoms started they came fast and furious.

As always, that is strictly my own observation and I claim no medical validity for it.

"Needing a cup of coffee" may be a variation on "wonky-headedness," the hard-to-describe not-quite-focused brain, or brain fog, many of us feel to some degree.

ETA: I mentally morphed two posts into one and answered them both here, part belonging elsewhere. See, wonky-headed! 

[Jim Scott]

Lora ~

It sounds as if you have all the symptoms of a growing AN, but I'm not a doctor and cannot advise you.  That being the case, I would call a real doctor (Fayad) and explain what's happening or e-mail him, if he accepts them from patients.  I can understand your reluctance to 'bother' your doctor but unless these symptoms cease on their own or can be directly traced to your cold, he needs to know so he can advise you properly.  If your AN is growing (an MRI will tell) you may need to address it sooner rather than later.  Your doctor may (or may not) want to push up your scheduled MRI date.  You won't know unless you ask.  I suggest you ask. 

Jim

[Keeping Up]

Hello

I too am a watch and waiter.

I had some unusual symptoms for me in April (I was first diagnosed in December - slightly bigger, but all IAC tumor).  I debated what to do - and finally went to the doctor.  He listened, gave me an explanation and did another hearing test - nothing came up unusual.  I haven't had too many symptoms since - so in my case, truly think that a bout of anxiety exaggerated my symptoms (however, I am not anxiety ridden - if I stand talking to someone and turn my head to talk to someone else, I have a tendency to stagger - so something is definitely happening, just not debilitating!).  My ENT is firmly in the court that IAC tumors don't grow that fast - I was diagnosed just before you - so doesn't feel growth would cause the symptoms but is par for the course (in my case) for an IAC tumor.  The facial twitching is a bit less common however (based on my reading of these sites - so would be concerned about it).

My point - call, talk to someone, keep track how many times you have facial twitching over the course of a week and explain it to them. 

I have my first 6 month follow-up MRI next week, my first neurosurgeon  - wondering if this sucker has grown!

Good luck - talk to the doctors, and don't feel silly.

Ann